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of the expectations and opportunities that accompany specific sociocultural environments. Attitudes, assumptions, preferences, and prejudices encounteredthroughout society help create social-environmental disability risks. Forexample, in agricultural occupational settings individuals are expected to havecertain physical skills, abilities, and characteristics. Because of the physicaldemands and sociocultural expectations of that environment, the likelihood or risk of a functional limitation becoming a disability is greater than in a cultural setting that assigns less value to these characteristics. Thus job settings cancreate a social-environmental risk for disability when individuals are required toperform tasks that exceed their physical (or mental) abilities. Individuals with disabling conditions often report that their independence of action is significantly influenced by the attitudes of those in theirenvironment. These attitudes are reflected both in the way individuals relate tothose with disabling conditions and in the public policies that are adopted bysociety. Paternalism, for example, whereby individuals provide resources but not freedom of choice in the use of those resources, is not uncommon. This practice requires a compliance on the part of those with disabling conditionsthat affects self-esteem negatively and encourages dependent roles —a result that can contribute to a lack of initiative and independence in social and worksituations. It also is not uncommon for persons with disabling conditions toencounter discriminatory attitudes and behavior —for example, being prejudged as unable to assume roles such as worker, spouse, sports participant, orindependent resident. It is also not uncommon for those with physicallydisabling conditions to be treated as though they had mental impairment as well. Much as social-environmental risk factors stem from sociocultural expectations and opportunities, physical-environmental risk factors have theirsource in the physical places in which people conduct their daily lives. Likesocial-environmental risk factors, physical-environmental risk factors also occurin a variety of forms. The risk can occur as a direct result of the physical designof public places or of the individual's workplace or living arrangements. These environments can put an individual at risk for injury or disease, which can trigger a process that leads to disability; they also can place individuals incircumstances in which impairments and functional limitations becomedisabling. Examples of the former risk include workplaces in which employeesare not protected from dangerous machinery, households with slippery floors(or other problems that promote injuries), or exposure to toxicants (e. g., leadpaint) and other disease-causing agents. Examples of the latter includeinadequate access to the built environment for individuals who use wheelchairs,prostheses, orthosis, or guide or hearing dogs. Inadequate public transportationalso can put individuals with impairments or functional limitations at increasedrisk for disability. A MODEL FOR DISABILITY AND DISABILITY PREVENTION 87About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution.. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Designing intervention strategies for environmental risks can be difficult. There often is not a clear-cut option between modifying the environment ortargeting the intervention to the individual with the disabling condition. In somecases, such as the inaccessibility of public accommodations, a legislativeapproach —one that requires modification of the environment —is the solution. The recent passage of the landmark Americans with Disabilities Act is an excellent example. Unfortunately, not every environmental risk lends itself to such a solution. In many cases interventions require a careful balance ofmodifications to the physical and social environments (e. g., altering theworkplace and increasing educational efforts) and interventions designed toassist people with disabling conditions in adjusting to the environment (e. g.,rehabilitation and retraining). These issues are discussed in more detail in Chapter 7. Lifestyle and Behavioral Factors Lifestyle and behavioral risk factors consist of personal decisions and habits that affect one's health and over which one has considerable control. Lifestyles and behaviors that are detrimental to health create self-imposed risks. Research has made it clear that unhealthy lifestyles contribute to mortality andmorbidity in affluent, industrialized countries. The Centers for Disease Control has estimated that 50 percent of the deaths attributed to the 10 leading causes of mortality can be directly related to ''lifestyles. " Foremost among thesebehavioral risk factors, according to Hamburg (1984), are smoking, excessivealcohol intake, illicit drug use, poor dietary habits, insufficient exercise,reckless driving, noncompliance with medication regimens, and maladaptiveresponses to stressful experience. As Hamburg notes, "A new awareness hasdawned: much of disease and disability is related to human behavior, andtherefore the role of behavior in keeping people healthy must be understoodscientifically. In this direction lies the possibility of preventing much diseaseand promoting health. This promising approach affects the well being of peopleeverywhere. " Because Hamburg's list of risk factors was published in 1984, it did not include unsafe sexual behavior as a major contributor to mortality andmorbidity. With the AIDS (acquired immune deficiency syndrome) epidemic,however, unsafe sexual behavior must be added to the list of behaviors that contribute to disability and mortality in the United States. Moreover, Hamburg points to cigarette smoking as the most important environmental factor andalcohol abuse as the most serious drug problem in America, but the toll takenby cocaine abuse also now must be taken into account. For example,Hahnemann University Hospital in Philadelphia reports that 40 percent of aconsecutive series of 500 mothers who delivered babies and who were insuredby Medicaid had evidence of cocaine in urine or blood samples at the time of A MODEL FOR DISABILITY AND DISABILITY PREVENTION 88About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
delivery (M. R. Spence, Department of Obstetrics and Gynecology, Hahnemann University Hospital, personal communication, 1990). Cocaine use duringpregnancy and the consequent intrauterine exposure of cocaine to thedeveloping fetal brain increases the risk of reduced learning and socializingabilities and the development of disabling conditions. Many health-damaging behaviors, such as smoking, overeating, and alcohol and drug abuse, are extremely resistant to permanent change(Matarazzo et al., 1984). It is therefore time-and resource-consuming to try toeffect change in these behaviors. Matarazzo and coauthors conclude that publichealth programs designed to change health-related behaviors should beundertaken only after careful pilot studies. To do otherwise, they warn, is to riskdamaging society's willingness to invest fiscal and human resources in prevention. Nonetheless, it is increasingly obvious that successful programs have the potential to yield large returns to individuals and to society. Belloc (1973) identified seven specific personal health practices that were highly correlated with the physical health of some 7,000 Americans. Thesehealth practices included sleeping 7 to 8 hours daily; eating breakfast almostevery day; never or rarely eating between meals; currently being at or near aprescribed height-adjusted weight; never smoking cigarettes; moderate or nouse of alcohol; and regular physical activity. A correlation was found betweenlong survival and an increase in the number of health-related behaviors adopted. These behaviors also resulted in a decrease in the morbidity associated with many disorders, such as heart disease, lung cancer, and hypertension —illnesses that cost society substantial medical care dollars and losses resulting fromforgone productivity. Health-related behaviors such as those described above greatly influence the onset and progression of disabling conditions. Physical fitness, for example,can affect both the severity of an injury sustained from a fall and the recoveryfrom it. Fitness and exercise are also major factors in maintaining maximalfunctioning in people with paraplegia, for example, to prevent progression inthe disabling process and the development of secondary conditions. Finally, many risk factors exist at the intersection of the three risk factor categories described above. Personality, for instance, is probably a product ofall three —biological, behavioral, and environmental. Quality of Life Quality of life generally corresponds to total well-being, encompassing both physical and psychosocial determinants (Wenger et al., 1984). So defined,quality of life closely approximates the World Health Organization's definitionof health as a state of complete physical, mental, and social well-being, and notmerely the absence of disease or infirmity (WHO, 1947). Components ofquality of life include performance of social roles, physical A MODEL FOR DISABILITY AND DISABILITY PREVENTION 89About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
status, emotional status, social interactions, intellectual functioning, economic status, and self-perceived or subjective health status (Wenger et al., 1984;Patrick and Erickson, 1988; Levine and Croog, 1984). Indicators of quality oflife have included standard of living, economic status, life satisfaction, qualityof housing and the neighborhood in which one lives, self-esteem, and jobsatisfaction. Quality of life is also clearly the product of broad social forces that influence, for example, education and employment opportunities or that result in differential treatment of groups within the population. The concept of quality of life subsumes many aspects of personal well-being that are not directly related to health. It is becoming increasingly clear,however, that health is the product of a complex array of factors, many of whichfall outside the traditional province of health care. Similarly, the health of thepopulation has commercial, economic, and social importance. Thus, quality oflife is assuming greater importance in the practice and evaluation of medicine(Levine, 1987), and its enhancement, in addition to curing disease or improving survival, is becoming an accepted goal of the health care professions. Concerns of health care providers now include, for example, whether a patient's physicalstate or treatment modality causes depression or dependency, limits roleperformance, or creates poor perceptions of health. Indeed, functioning and roleperformance are considered important, if not central, variables in applying thequality of life concept in health assessments. Quality of life is relevant to all stages of the disabling process, beginning with pathology. Indeed, gradual deterioration in function, as in the case of somechronic diseases, or the sudden occurrence of disability, as in the case of seriousinjuries, must be viewed in the context of how quality of life is affected. Forpeople facing such circumstances, preventing deterioration in function istantamount to maintaining their lives at a certain level of quality. In turn, conditions within society greatly affect the health and well-being of these individuals. Those who have functional limitations may not have theopportunity to participate in society if it does not accommodate theirlimitations. Affected individuals may be healthy in the sense that their residualimpairments have stabilized and they are free of pathology, but they are nothealthy in a social sense. If the essence of health is, as some have maintained,the ability to perform personally valued activities, then disability is a socialdefinition of ill health. As depicted in Figure 3-3, quality of life affects and is affected by the outcomes of each stage of the disabling process. Within the disabling process,each stage interacts with an individual's quality of life; it is not an endpoint ofthe model but rather an integral part. There is no universal threshold —no particular level of impairment or functional limitation —at which people perceive themselves as having lost their personal autonomy A MODEL FOR DISABILITY AND DISABILITY PREVENTION 90About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
and diminished the quality of their lives. Perceptions of personal independence and quality of life, however, are clearly important in determining howindividuals respond to challenges at each of the four stages of the disablingprocess. (A similar theoretical model for health status and quality of life isdescribed by Patrick and Bergner, 1990. ) In addition, social roles are valued differently by individuals and social groups. In the evaluation of disabling conditions, considerable attention is oftenpaid to the socially valued roles, principally work. To the individual, however,other roles and activities may be more important and rewarding than work. Thus, it is important to assess both the objective aspects of quality of life, suchas whether a person has changed jobs because of an impairment or healthproblem, and the subjective aspects, such as the individual's satisfaction with the job. Quality of life for persons with disabling conditions can be enhanced or at least maintained even if functioning cannot be improved. Modification of theenvironment, such as the construction of a ramp into a building or the reductionof negative attitudes and stereotypes, can help to improve an individual's qualityof life as well as prevent disability by restoring role performance even whenfunctional limitations cannot be redressed. Improved measures of quality of life are needed for use in assessments of health and disability. The Disabling Process At the center of the model is the disabling process. Although it seems to indicate a unidirectional progression from pathology to impairment tofunctional limitation to disability, and although a stepwise progression oftenoccurs, progression from one stage to another is not always the case. Anindividual with a disabling condition might skip over components of the model,for example, when the public's attitude toward a disfiguring impairment causesno functional limitation but does impose a disability by affecting socialinteraction. It is also important to note that the effects of specific stages in themodel can be moderated by such interventions as assistive devices. Similarly, environmental modification (e. g., elimination of physical obstacles and barriers) is an important form of disability prevention, as is legislation such as therecently enacted Americans with Disabilities Act —a landmark in antidiscrimination legislation directed toward ensuring the rights of people withdisabling conditions. An important feature of the disabling process is its interaction with risk factors —a feature that is essential to the development of preventive interventions. For example, the outcome of heart disease is not predetermined atthe time of diagnosis, and changes in diet, regular exercise, adoption of less A MODEL FOR DISABILITY AND DISABILITY PREVENTION 91About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
stressful work habits, and other health-promoting practices may actually result in improved functioning, even though the underlying condition will persist. Inaddition, risk factors can interact with so-called protective factors (not shown)to increase or decrease the likelihood of further change in health status. Thusthere are "feedback loops" in the disabling process that can hasten, slow, orprevent the progression to disability. Implicit in the model is the influence of important social and medical variables, such as the timely availability of appropriate medical andrehabilitative care, employment opportunities, and adequate housing. High ratesof disability among low socioeconomic groups and low rates of disabilityamong people with advanced educations are but two of many pieces ofcompelling evidence demonstrating the significant influences of social variables, which generally are not addressed in traditional medical approaches to treating people with disabling conditions. Thus a variety of personal, societal, and environmental factors can influence the progression of a potentially disabling condition from pathology todisability, the degree of limitation or disability, and the occurrence of secondaryconditions. Several of these factors are discussed below. Health Status Health status prior to the onset of a potentially disabling condition, as well as after the initiation of the disabling process, can significantly influence thedegree of limitation and the ability to avoid the development of secondaryconditions. Obesity, for example, can limit the amount of ambulation by anindividual with neurological impairment, making that person more susceptibleto skin infections or joint and muscle contractures. Skin infections and contractures, in turn, can lead to additional impairment and functional limitation. Psychological Status Successful management of potentially disabling conditions and prevention of secondary conditions depends greatly on the psychological status of theindividual with the condition. Thus the realization and acceptance of apotentially disabling condition, combined with a focus on adaptation, arenecessary components of preventive interventions as they apply to primary and secondary conditions. In addition, an individual's attitudes toward solving problems and functioning independently become important in minimizing bothprimary and secondary conditions. Also, coping skills as demonstrated prior tothe onset of a disabling condition are important to those facing a majordisabling event, particularly those skills relating to flexibility A MODEL FOR DISABILITY AND DISABILITY PREVENTION 92About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
in coping with change. Motivation for adaptation is poorly understood but is uniformly seen as necessary for successful rehabilitation. Socioeconomic Status Socioeconomic status and the risk of disability are inversely related. In part, this relationship is explained by the income-suppressing effects ofdisability (Luft, 1978). The same inverse relationship is found, however,between disability risk and level of educational attainment (La Plante, 1988),which is less sensitive to such income effects. Clearly, there are factorsassociated with being poor that powerfully increase the risk of pathology andthe progression to disability. Differences in personal expectations, demands of the social and living environments, ability to control personal and social circumstances, access to adequate health care, and individual behavior have allbeen hypothesized to play a role. Although we know that rates of disability are higher among lower socioeconomic groups, we do not know precisely why. People in lowsocioeconomic groups are at higher-than-average risk for a variety of chronicdiseases and injuries (Susser et al., 1985; Syme and Berkman, 1976), and theyare more likely to work in physically demanding occupations that afford littlecontrol over the conditions of their jobs and work sites. Moreover, they are less likely than those in higher socioeconomic groups to get the health care they need to avoid impairment and functional limitation. Although health andwelfare programs defray expenses and help offset income losses for personswith disabling conditions, they do so only for those with the most severedisabilities. Even for these people, however, some acute and long-term careneeds go unaddressed. Educational Status and Vocational Training On average, earnings rise in tandem with levels of educational attainment, and higher levels of earnings perhaps are an incentive for returning to workfollowing the onset of disability. Indeed, among the population of people withdisabling conditions, those with college-level educations are less likely to beunemployed or underemployed than those with lower levels of educationaltraining. Moreover, education is believed to be correlated with flexibility and adaptability, which are necessary for adjusting to the changes imposed by a potentially disabling condition. Nevertheless, after taking into considerationthese obvious factors, the reason why people with higher levels of educationhave lower levels of disease and disability remains largely unexplained (Sagan,1987). More knowledge about this topic is important to understanding disabilitycausation and prevention. Previous job experience also tends to increase the options available to an A MODEL FOR DISABILITY AND DISABILITY PREVENTION 93About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
individual with functional limitations. Experience and training serve as the basis for occupational planning. Those with easily transferable skills are more likelyto return to work than those who have narrow job experience and who, becauseof their functional limitations, cannot return to their previous employment. Thuspeople who were involved in physically demanding occupations usually are lessable to return to their former job than those who were engaged in sedentary, white-collar jobs prior to the initiation of the disabling condition. Another key variable influencing employability is the attitude of the previous employer. Some employers are willing to make major work-site modifications, whereasothers are quite rigid in their requirements for conformance to usual jobdescriptions. Climate The opportunity for independent community living and access to work for people with disabling conditions often are influenced by the characteristics ofthe climate (e. g., typical weather patterns), as well as of the social environment(e. g., social attitudes and programs). Frequent snow and limitations in itsremoval, for example, can influence the mobility of a physically restrictedindividual. Another example is the fact that urban areas often have socialsupport programs for persons with major disabling conditions than do relatively isolated rural areas. Some advocacy groups have noted an apparent migration of individuals with disabling conditions from relatively rural to more urban areas that offermore support and opportunity. At times, those with disabling conditions areable to enhance their independence by moving to an area with a different andless restrictive environment or climate. However, the net effect of such moves isa function of many variables, including the individual's social support system,as well as factors related to the regional environment. The relationship between risk factors, such as health, education, socioeconomic status, and psychosocial status, and the disabling process needs to be elucidated. Multiplicity of Conditions and Disabilities In considering the disabling process, it is important to recognize that persons can have multiple chronic conditions, multiple functional problems, andeven multiple disabilities because each role that an individual normallyperforms produces an opportunity for disability to manifest. Thus anindependent disabling condition can develop in a person who already has one. A more likely situation, however, is one in which additional disabling conditions result as a consequence of a primary disabling condition. An example A MODEL FOR DISABILITY AND DISABILITY PREVENTION 94About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
is the disuse syndrome, in which a person with paralysis (primary condition) develops pressure sores (secondary condition). In this example, an impairment(paralysis) causes the development of other conditions (pressure sores) andadditional losses of capability. In addition, the risk of progression fromimpairment to functional limitation to disability will increase if other conditionsare present (Guralnik et al., 1989b). Similarly, the risk of progression from functional limitation to disability can be expected to increase in the presence of multiple functional limitations in such a way that a previously low risk ofdisability is elevated to high probability. Thus multiple disabling conditions arise in many different ways and may or may not be causally related. If there is neither a direct nor an indirect linkagebetween conditions, that is, if they are independent, then the two conditionswould be expected to occur no more frequently than by chance alone. Analysisof National Health Interview Survey (NHIS) data, however, shows that severalcombinations of disabling conditions, including hypertension with arthritis and hypertension with heart disease, occur more frequently than would be expected by chance alone. In addition, persons with multiple disabling conditions aremore likely to have severe limitations in activity. Thus prevention of secondaryconditions is an important aspect of reducing disability and improving thequality of life. (Prevention of secondary conditions is discussed in more detailin Chapter 7. ) THE NEED FOR EPIDEMIOLOGY Epidemiology is the study of the distributions and determinants of states of health in human populations. Despite the significance of disability as a healthand social issue, it has received little attention from the epidemiologicalcommunity (Nagi, 1976; Appendix A, this volume). Nagi (1976) attributes this seeming lack of interest to the preoccupation of epidemiology with pathologyand impairment, the conceptual confusion surrounding the meaning of disability and related terms, and problems in the reliability and validity of available measures. As discussed later in this chapter in relation to the need forsurveillance, the available epidemiologic data are mostly prevalence data. Incidence data on disability are more difficult to obtain and are lacking. Thepurpose of this section is to discuss the need for epidemiologic studies ofdisability, that is, beyond pathology and impairment. The need applies to all ofthe elements in the conceptual framework of disability, including risk factors,quality of life factors, pathology, impairment, functional limitation, disability,and levels of functional performance in everyday living. As noted previously, disability refers to limitations in carrying out activities that people are generally expected to be able to perform (Haber, 1988;Nagi, 1965; Appendix A, this volume). Human activities vary in many A MODEL FOR DISABILITY AND DISABILITY PREVENTION 95About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
ways, including whether they are necessary, the degree to which an individual is expected by others to perform them, and the degree to which the individualdesires to perform them. In addition, disease, injury, and congenital anddevelopmental conditions limit human behavior; the distribution of theselimitations is not random in human populations; and epidemiological principlescan be used to study health-related limitations in human activity and how they might be prevented. Epidemiologists traditionally study the distribution of disease in a population and attempt to understand the determinants of that distribution. Theusefulness of this approach for the study of disability is somewhat limitedbecause the concept of disability does not fit the traditional disease model. Forexample, a developmental condition, injury, or disease does not necessarily lead to disability. Whether it does depends on many factors, including the level of functional limitation associated with the condition, the activities the person withthe condition is expected to perform or may want to do, and features of theliving and work environments. In much traditional epidemiological research, it is necessary only to identify the existence of a disease, condition, or injury. In epidemiologicalresearch on disability, however, social and behavioral variables must be takeninto consideration. Nonetheless, the same principles that guide epidemiologicalresearch on disease are relevant to research on disability. For example, a fundamental premise of epidemiological research is that disease does not occur randomly in the population. Disabilities, like diseases, also are not randomlydistributed. In addition, as with diseases, rates of disability vary amongpopulation groups. Epidemiological methods can be used to describe thesedistributions, help identify risk factors, and, in turn, guide development ofdisability prevention programs. The challenge is to recognize the shortcomingsof traditional methods for addressing disability and then develop the tools anddata networks necessary to identify the causes of disabilities and theirassociated risk factors. Gathering this information will require studying socialand behavioral variables that were once considered to be outside the domain ofepidemiology and even public health. This task will be speeded by the broader epidemiological perspective that appears to be evolving today in the field of public health. For example, publichealth interest in AIDS has helped pave the way for a more sophisticatedepidemiology of disability by targeting efforts toward the behaviors and events that result in the transmission of the HIV and the onset of AIDS. As the life spans of people with AIDS are prolonged, however, the field of public healthwill need to direct additional attention to issues of long-term disabilitymanagement. Although the relationship between some risk factors and certain disabilities is well understood, much remains unknown. Some needed information can beobtained by organizing and analyzing data that are already available. A MODEL FOR DISABILITY AND DISABILITY PREVENTION 96About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
But much of the available information on people with disabling conditions has been collected piecemeal by many agencies, each with the aim of meeting itsown particular needs. Thus large voids remain that cannot be filled withexisting data, and a more comprehensive approach to data collection is neededto develop an adequate knowledge base on the risk of disability. Standard terminology and conceptual clarity are essential to meaningful discourse, productive research, and effective prevention efforts. As mentionedabove, conceptual confusion surrounding the meaning of disability and relatedterms has hindered epidemiologic research on disability, and an underlyingobstacle to data collection and analysis continues to be the lack of a widelyaccepted, uniformly applied conceptual framework. During the past 10 to 15years two major options have emerged: the Nagi and the ICIDH model frameworks. The ICIDH has become the de facto international standard, but neither framework is dominant in the United States, and scientific consensus islacking. The need for conceptual clarity and uniform terminology in the field of disability prevention is essential and immediate. The model developed by this committee reflects its recommendation for standardized concepts andterminology that can serve as the basis for developing preventive interventions and an epidemiology of disability. Once a nationally accepted framework is in place, future survey research efforts related to disability should be required to demonstrate that the concepts,terms, and questions used in the survey are anchored within the agreed-uponframework. Such a grounding would increase the probability that the resultsfrom one survey could be compared with those of another, thereby improvingthe utility of survey data. Data Needs Disability prevention requires continuing population surveillance. To be effective, such surveillance should be more thorough than the existingpatchwork system, be based on an improved understanding of the causes ofdisabilities and associated risk factors, and reflect greater knowledge of theeconomic and social consequences of disability, including the effects ofdisability on quality of life. In short, the paths of the model in Figure 3-3 must be explored and quantified, the mechanisms described, and intervention strategies developed. Questions that must be addressed if we are to set prioritiesfor disability prevention include the following: Do conditions with the highestrisks of disability also pose the highest risks of functional limitation andimpairment? To what extent do behavioral factors combine with impairmentand functional limitation to determine disability outcomes? How does A MODEL FOR DISABILITY AND DISABILITY PREVENTION 97About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
the environment affect disability outcome, and does the effect of the environment depend on the nature of the impairment and functional limitation? The following sections discuss data and research needs that should be addressed to ensure that basic epidemiological elements of effective preventionefforts are in place. Risk Factors Research on biological, environmental (physical and social), and behavioral risk factors is one of the cornerstones of epidemiology and,consequently, of health promotion and disease prevention. As the model of thedisabling process illustrates, knowledge of risk factors is central to disabilityprevention. Indeed, a comprehensive understanding of risks is critical toanswering three fundamental questions: Given exposure to environmental agents or other provocations, why do some persons develop potentially disabling conditions and others donot? Given such exposure and the occurrence of pathology or injury, why does one person develop a disability and another does not? That is,what determines the progression toward functional limitation anddisability? At the aggregate level, why do some population groups have higher rates of disability than others? At each stage in the disabling process, biological and behavioral characteristics and features of the social and physical environment havedeterminative effects on individual outcomes. The genetically determinedhealthy or unhealthy nature of an individual's body systems is not the sole factorin the development of disease or disability. For example, not all people with abnormal glucose levels develop diabetes, and not all diabetics develop functional limitations or disabilities. An epidemiology of disability requires anexpanded perspective on risk factors because any specific type of disability canbe the product of many different kinds of pathology, impairment, and functionallimitations. Moreover, a complex array of variables, many of them outside thebounds of the usually emphasized biological risk factors, can speed, slow, halt,or reverse the stage-to-stage progression to disability. Such variables includethe adequacy and availability of social and medical services, socioeconomicstatus, marital status, job experience, and amount of educational and vocationaltraining. Research has demonstrated the importance of psychosocial risk factors in disability (Haan et al., 1989), but the findings thus far are largely in the form ofleads for further research. Critically important details remain to be identified — for example, the influence of social support, a concept that refers to the qualityand breadth of one's relationships with a mate, other A MODEL FOR DISABILITY AND DISABILITY PREVENTION 98About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
family members, friends, and others. Lack of social support has been associated with an increased risk of heart disease, complications of pregnancy anddelivery, suicide, and other conditions (Dutton and Levine, 1989; U. S. Department of Health, Education, and Welfare, 1979). An important questionis, what underlying biological mechanisms are affected by social support? Theanswer to the question of underlying biological mechanisms may not emerge if the focus of investigation is limited to only one condition. Perhaps the most productive way to detect the underlying mechanism in this case is to study allhealth consequences associated with inadequate social support (Haan et al.,1989). Although the condition-specific approach of epidemiology has increased our understanding of diseases and their prevention, it may lead to overly narrowperspectives on prevention, corresponding to disease classifications (see Table 3-1 ). An alternative approach would be based on risk factors that predispose an individual to several disease conditions that can lead to disability, such as those shown in Table 3-2. From the viewpoint of public health, a classification scheme that identifies causative features common to severaldisabling conditions may foster more efficient prevention programs, focusingon risk factors implicated in multiple conditions that predispose an individual todisability. This strategy might offer opportunities to achieve benefits that arelarger than the sum of the returns to individual disorder-specific initiatives. Although epidemiology is essential to disability prevention, very little epidemiological research on risk factors for disability or on disability per se hasbeen done, and few studies have been conducted to identify populations atincreased risk of disability. Most relevant data relate to clinical conditions,which correspond most closely to the pathology and impairment stages of thecommittee's model. Some functional limitation and disability information can be extrapolated from the NHIS data (see Chapter 2 ), but this methodology does not produce very precise measures. In addition, although potentially disablingconditions are dynamic and can improve as well as deteriorate, existing datasystems can neither measure the dynamics of disability progression nor identifyrisk factors that accelerate progression from impairment to functional limitationto disability. More specific epidemiological data are needed on the incidence and prevalence of functional limitation and disability and their attendant risk factors. Populations at higher risk for disability need to be identified andtheir risk factors assessed to develop interventions to prevent disability. Longitudinal studies are needed to help define the dynamic nature of impairment, functional limitation, and disability and to describe the natural history of chronic conditions and aging in terms of these functional outcomes. A MODEL FOR DISABILITY AND DISABILITY PREVENTION 99About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 3-1 Major Causes of Death and Associated Risk Factors, United States, 1977 Cause Percentage of All Deaths Risk Factors Heart disease 37. 8 Smoking, hypertension, elevated serum cholesterol, diet, lack of exercise, diabetes, stress, family history Malignant neoplasms 20. 4 Smoking, work-site carcinogens, environmentalcarcinogens, alcohol, diet Stroke 9. 6 Hypertension, smoking, elevated serum cholesterol, stress Non-vehicular injuries 2. 8 Alcohol, drug abuse, smoking (fires), product design, handgun availability Influenza and pneumonia 2. 7 Smoking, vaccination status Motor vehicle crashes 2. 6 Alcohol, no seat belts, speed, roadway design,vehicle engineering Diabetes 1. 7 Obesity Cirrhosis of the liver 1. 6 Alcohol abuse Arteriosclerosis 1. 5 Elevated serum cholesterol Suicide 1. 5 Stress, alcohol and drug abuse, gun availability SOURCE: Matarazzo, 1984. Reprinted with permission. The Need for Surveillance The changing demographic profile of the U. S. population and the associated patterns of disability risk demonstrate the necessity of continued surveillance of the incidence and prevalence of chronic physical and mental health conditions, injury, and disability. Some research indicates that the risk ofdisability has been increasing for all population age cohorts, although there isconsiderable debate about the reasons for this trend. There has also been anoticeable increase in work disability rates (Chirikos, 1989). In addition, theaging of the population may bring increased risks of disability. Existing national data sets that track the prevalence of chronic conditions over time are useful for disability surveillance. The lack of data on incidencerates, however, is a serious void in disability surveillance and an impediment to fundamental understanding of the disabling process. Incidence data provide a measure of the rate at which a population develops a chronic A MODEL FOR DISABILITY AND DISABILITY PREVENTION 100About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
condition, impairment, functional limitation, or disability and thereby yield estimates of the probability or risk of these events. Most existing data, however,provide information only on prevalence, not incidence. Prevalence is the netresult of changes in incidence and the duration of time a person has a condition. Duration is determined by rates of recovery and mortality. When one comparespopulation groups, only incidence data provide a clear picture of how risks differ among populations. Prevalence data, on the other hand, reflect not only these risks but also differences in rates of recovery and mortality. Thuspopulations with equal risks of developing TABLE 3-2 Risk Factors in Chronic Disease and Disability Risk Factor Some Related Conditions Smoking Lung cancer Emphysema Bronchitis Other respiratory diseases Coronary artery disease Burns (especially home fires) Alcohol abuse Injuries sustained in motor vehicle accidents, especially head injuries and pedestrian injuries Cirrhosis Fetal alcohol syndrome Lack of prenatal care Mental retardation Cerebral palsy Congenital heart abnormalities (via rubella)Various congenital anomalies (e. g., through failure to control blood sugar in pregnant diabetic women) Other developmental disabilities Socioeconomic status Low birthweight Injury Coronary heart disease Lung cancer Osteoarthritis Death Diabetes mellitus Cervical cancer A MODEL FOR DISABILITY AND DISABILITY PREVENTION 101About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
disability may differ in prevalence because of differences in access to medical and rehabilitative care. Information on incidence is therefore critical tounderstanding the causes of disability. Data on duration, however, are useful togauge rates of recovery and mortality. Only when incidence and duration areknown can one understand what causes disability and what determines itscourse. Collecting data on the incidence and duration of pathology, impairment, and functional limitation as well as secondary conditions is an important component of the disability surveillance effort that is needed. Although the NHIS includes some disability-related questions, it is quite limited in scope because it is a general-purpose survey of the health of thenation and not designed to investigate efficiently the causes and risks ofdisability. To conduct such an investigation requires a comprehensivelongitudinal survey that could address each path of the model displayed in Figure 3-3, particularly the biological, lifestyle and behavioral, and physical and social environmental factors influencing transitions from pathology to impairment and on to functional limitation and disability. A longitudinal survey of disability is needed to assist in determining the causes and rate of transition between pathology, impairment, functional limitation, and disability. The survey should make use of data linkages to existing agency data sets on need, use, and costs of services; be responsive as a policy development resource tool; and evaluate the causal relationshipbetween socioeconomic status and disability. The development and implementation of this survey should be a collaborative effort involving the U. S. Census Bureau, the Centers for Disease Control, the National Center for Health Statistics, the National Institute on Disability and Rehabilitation Research, the National Institute on Aging, the Health Care Financing Administration, the Social Security Administration (SSA), and other relevant agencies. Before conducting a new survey, however, consideration should be given to the utility of longitudinal analysis of existing data sources such as the SSA 1971-1974 disability survey, the Boston University project of the Framingham Study, the SSA 1969-1970 Retirement History Survey, the Census Bureau's SIPP, and the Department of Labor manpower mobility surveys. The Need for Priorities In terms of goals and implementation, disability prevention is usually thought to mean primary prevention —averting the onset of a potentially disabling pathology or an impairment that leads to a disability (see section onprimary prevention that follows). The model set forth in this chapter, however,underscores the fact that well after the onset of a potentially A MODEL FOR DISABILITY AND DISABILITY PREVENTION 102About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
disabling condition, multiple points of intervention exist at which to prevent disability or diminish its severity. Although this model can help lead to manynew opportunities for prevention, it does not specify what priorities to place onthe possible points of intervention. Priority setting must include an analysis ofepidemiological data pertaining to the causes and natural history of variousdisabling conditions. As noted in Chapter 2, some of the less prevalent potentially disabling conditions (e. g., spinal cord injury) have a high risk of disability, whereas someof the more prevalent conditions (e. g., arthritis) have a fairly low risk ofdisability. The inverse relationship between the prevalence of a condition andthe risk of disability presents an enormous challenge in forging preventionstrategies. Primary prevention strategies are normally targeted to higher-than-average risk groups in the general population, even though the overall risk of acquiring a disabling condition is very small. Secondary prevention strategiesare targeted to those who have already acquired a condition but may not beexperiencing its disabling effects. Neither course of action may be necessarilyefficient or cost-effective. The committee considered several competing and overlapping principles and criteria on which priorities for prevention could be based. These includedthe following: prevalence of specific conditions that can cause disability; number of persons who are likely to experience some degree of limitation or disability associated with a particular condition; severity of disabling conditions and their probable impact on the individual, the family, and society; the number of expected disability years (not merely the prevalence of a condition or its limitations); and how the prevalence and severity of selected conditions are likely to grow in future years. As discussed in the recent National Research Council report on disability statistics (NRC, 1990), a study is needed in which a combination of the above-mentioned principles and criteria is used to conduct an objective analysis thatwill lead to alternative indexes of disability risk and public health impact. Theseindexes can then be used to set priorities for prevention efforts among all conditions. A disability index or group of indexes is needed to help establish priorities for disability prevention among conditions and to gauge and monitor the magnitude of disability as a public health issue. This index or group ofindexes should include measures of independence, productive life expectancy (both paid and unpaid), and quality of life. A MODEL FOR DISABILITY AND DISABILITY PREVENTION 103About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
In the absence of such an index, the committee is reluctant to recommend prevention strategies that favor one disabling condition over another. However,in succeeding chapters the committee cites some of the needs and issues relatedto several categories of individual disabling conditions. Major gaps exist in the data and knowledge about risk factors associated with disability. One reason for these gaps is that most disability-related data areoriented toward clinical categories or impairments. Such categories may haveclinical utility for addressing the treatment needs of persons with specificimpairments, but they are not useful in fostering an epidemiology based on risk factors such as those related to the social and physical environment. As discussed earlier (under the section on risk factors), the committee believes that specific conditions may not always be the most appropriate oreffective means for setting priorities or identifying targets for the developmentof preventive intervention strategies. An alternative method for consideration isto focus on risk factors or causes that are generic to the etiology of several disabling conditions. Some examples include smoking, alcohol abuse, drug abuse, socioeconomic status, and lack of prenatal care (see Table 3-2 ). These risk factors are already associated with many of the nation's leading healthproblems. Less understood is their relationship to disability. Cause-oriented disability data need to be considered possible alternatives in the development of approaches to identifying priorities in disability prevention. APPLYING TRADITIONAL PREVENTION STRATEGIES TO DISABILITY The standard public health model delineates three categories of prevention efforts —primary, secondary, and tertiary —each one focusing on distinct stages in the natural history of diseases. This same model is applicable to theprevention of disability. And, as is true for all prevention programs,epidemiological data and analyses are the cornerstones of effective planning and evaluation. Thus the quality and quantity of the available epidemiological data, as discussed in the previous section, will be critical to the development ofeffective intervention strategies. Here, the committee briefly summarizes theprimary, secondary, and tertiary approaches to prevention and how they mightbe applied to disability (see Patrick and Peach [1989] for additionalinformation). Prevention efforts that are specific to various disabling conditionsare discussed in more detail in succeeding chapters. Primary Prevention Primary prevention focuses on healthy persons, seeking to avoid the onset of pathological processes by reducing susceptibility, controlling exposure A MODEL FOR DISABILITY AND DISABILITY PREVENTION 104About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
to disease-causing agents, and eliminating or at least minimizing behaviors and environmental factors that increase the risk of illness, injury, or disability. Interventions include (1) health promotion and education, which are largelytailored to fostering adoption of healthy lifestyles; (2) health protection, such asmeasures designed to improve air quality or food safety; and (3) preventivehealth services, such as immunization or counseling. Most public health efforts fall into the category of primary prevention. Unfortunately, and incorrectly, people with potentially disabling conditionsoften are not recognized as a target population for primary prevention efforts,despite the fact that having a potentially disabling condition frequentlyincreases the need for good health promotion and disease prevention practices. With respect to disability, primary prevention usually means preventing the initiation of a potentially disabling condition such as spinal cord injury. However, having a disabling condition does not preclude the need for otherprimary prevention activities such as exercise and immunization. Primaryprevention of disabling conditions is a focus of attention in this report, butadditional emphasis is focused on people who already have potentially disablingconditions, i. e., secondary and tertiary prevention. Health-promoting practices, appropriate medical care, and other measures that help ensure good health and a reasonable quality of life are as important topeople with disabling conditions as they are to people without them. Similarly,they are as important to the elderly as they are to the young. It is never too lateto benefit from quitting smoking, adopting good dietary practices, or engagingin regular exercise, as illustrated in the report on the benefits of smoking cessation for those with coronary heart disease who are over 55 years of age (Hermanson et al., 1988). These and other health-promoting measures payhealth dividends to all. Indeed, health promotion directed toward older adultshas great potential for impact because the benefits of healthy behaviors may beachieved relatively quickly. Given that the prevalence of chronic diseases risessharply in this age group and that this segment of the population is growingrapidly, the societal benefits of health promotion and disability preventionduring later life may be great (Institute of Medicine, 1990a). Moreover, the purpose of health promotion is not simply to extend life but also to improve the quality of life and to extend active life free of disability(Fries, 1988; Katz et al., 1983). Health promotion is applicable to all age groupsand although the messages might change for different ages, the major themeswith respect to exercise, diet, substance abuse, and injury prevention are oftenthe same. Reinforcing messages in the community, at schools, at the workplace,and in the doctor's office provides the social context that can facilitate behavior change. Health promotion for children should help establish lifelong habits for maintaining health. For adults, the emphasis should be on modifying riskfactors related to disease and disability and maintaining healthy behaviors(Institute of Medicine, 1990a; Keil et al., 1989; Pinsky et al., 1985). A MODEL FOR DISABILITY AND DISABILITY PREVENTION 105About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Secondary Prevention Secondary prevention activities include early detection and treatment of persons with early or asymptomatic disease, reduction in risk factors, vocationaland educational counseling, and social interventions. Common approachesinclude periodic screening of high-risk individuals and subsequent treatment ofthe pathology. Secondary prevention can in many cases cure a specificpathology, but in other cases secondary prevention merely slows the progression of a pathology toward becoming a clinical condition. People with chronic diseases and those with disabling conditions can benefit significantlyfrom secondary prevention efforts, and, as noted earlier, much of this reportfocuses on secondary and tertiary prevention. Not all diseases and disabling conditions, however, can be prevented. Examples include conditions that are strongly related to the process of aging(Fries and Crapo, 1981). Aging-related conditions include arteriosclerosis, non-insulin-dependent diabetes, cancer, osteoarthritis, emphysema, and cirrhosis, aswell as numerous other conditions that are less prevalent. Prevention measures are applied differently to aging-related conditions because individuals are seldom observed to be totally free of pathogenic changes. Plaque deposits inarteries, for example, can be found in most individuals, even at very youngages. Fries and Crapo (1981) argue, therefore, that it is better to think ofcontrolling (or eliminating) risk factors to affect the progression of theseconditions rather than to prevent the onset of the underlying pathologicalprocess. They maintain that primary prevention of aging-related conditions isnot possible because such conditions are a part of aging and occur in allindividuals. However, the rate at which such universal conditions progress canbe reduced so that clinically significant symptoms can be avoided or delayed. Thus prevention of many aging-related conditions begins with secondary prevention that aims to reduce the progression of these universal pathologicalprocesses. In some instances, although the condition may not disappear,secondary prevention is considered successful if from the standpoint of theaffected individual the symptoms are not noticeable and do not require clinical treatment. In such cases the condition in essence has been prevented. What are often considered to be primary prevention activities, such as not smoking, areoften secondary interventions for many aging-related, and potentially disabling,conditions because the condition has already been initiated. Tertiary Prevention Tertiary prevention strategies concentrate on arresting the progression of a condition and on preventing or limiting additional impairment, functional A MODEL FOR DISABILITY AND DISABILITY PREVENTION 106About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
limitation, and disability. These strategies can be directed toward the person, his or her environment, or society as a whole. Rehabilitation efforts, which attemptto restore function and the capacity to perform one's roles, are in the domain oftertiary prevention. Rehabilitation can address not only the individual with afunctional limitation or disability but also elements of the physical and socialenvironments that preclude participation in the activities of society by people with disabling conditions. Modifying or eliminating social and physical obstacles to personal autonomy and societal participation present opportunitiesfor prevention strategies that are not often enough accepted into the traditionalprovince of public health. Measures designed to foster independent living andhelp ensure a reasonable quality of life should clearly be major elements ofdisability prevention policies and strategies. Tertiary prevention, as well as secondary prevention, has not received as much emphasis in public health as the health-promoting, disease-preventingmeasures of primary prevention. However, the fact that more than 35 millionpeople already have some type of disabling condition underscores the need todevelop and implement secondary and tertiary prevention strategies that aredirected toward people with disabling conditions, and that will reduce the risks of additional limitation and prevent disability and secondary conditions. With the aging of the population there is growing interest in the prevention of age-related chronic disease and disability and the secondary and tertiary strategiesthat are designed to prevent them (Patrick and Peach, 1989). Given the dynamics of the disabling process and the variety of interacting risk factors, primary, secondary, and tertiary preventive measures will often berequired in concert. To take AIDS as an example, primary prevention is neededin the form of educating individuals about high-risk behaviors. Testing forexposure to HIV, especially in high-risk populations, and treatment to postpone the progression of the disease to AIDS or the characteristic set of symptoms known as AIDS-related complex (ARC) constitute secondary prevention. Tertiary prevention includes rehabilitation programs and social services thatseek to reduce the effects of AIDS or ARC so that affected people can performdesired roles and live independently. Another example is people who use wheelchairs and therefore have increased risk of developing pressure sores. Preventive intervention strategieswould include passive restraints that prevent spinal cord injury in automobilecrashes (primary prevention), modifying wheelchairs or teaching the individual who uses the wheelchair how to relieve pressure to reduce the likelihood of pressure sores (secondary prevention), and treating the sores to preventinfection and promote healing (tertiary prevention). In this, as in other cases,there are many opportunities to interrupt the disabling process and theprogression toward disability. A MODEL FOR DISABILITY AND DISABILITY PREVENTION 107About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Finally, although tertiary prevention might be where most prevention of disability itself occurs, primary and secondary strategies are essential elementsof disability prevention because they intervene in the disabling process toreduce the likelihood of progression of predisposing conditions towarddisability. Thus the public health and medical aspects of disability preventionare important, but should not overshadow or undercut the essential understanding of the social context of disability, as described throughout this report. Given the existence of predisposing functional limitations, thepredominant means of disability prevention and amelioration are often socialand economic. A MODEL FOR DISABILITY AND DISABILITY PREVENTION 108About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
4 Prevention of Developmental Disabilities The term developmental disabilities was introduced in the late 1960s to describe clinical disorders and diseases that cause disability, begin early in life, and require supportive services. This generic term covers a broad spectrum of impairments, ranging from mild to serious, and includes conditionscharacterized by mental retardation, cerebral palsy, epilepsy, and serioussensory impairment, as well as other childhood chronic illnesses associated withsignificant developmental delay. In 1970 the term was given a narrower legal definition in Public Law 91-517 for the purposes of public planning and policy. This definition was subsequently altered and given its current form in the Developmental Disabilities Act of 1984 (P. L. 98-527). Here, Developmental Disabilities (usinguppercase letters) were legally defined solely as severe, chronic conditionsattributable to a mental or physical impairment, manifest before age 22, andlikely to continue indefinitely, resulting in substantial limitations in a prescribedset of activities and requiring special interdisciplinary care. This restrictivedefinition generally has been interpreted to include only the most seriousconditions. This chapter will address developmental disabilities in the broader sense of the term, focusing on clinical disorders and diseases that can causedevelopmental delay. The concepts of prevention discussed here apply to allchronic health conditions that potentially can cause disability in childhood. PUBLIC HEALTH SIGNIFICANCE The scope of developmental disabilities is broad. An estimated 2 million to 4 million persons of all ages have such disabilities. The upper estimate isderived from the 1. 7 percent prevalence rate in a study by Wistar and Vernon PREVENTION OF DEVELOPMENTAL DISABILITIES 109About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
(1986). The lower estimate is based on national survey data by La Plante (1989a) and Sirrocco (1987). The two most common developmental disabilities,mental retardation and cerebral palsy, rank first and fifth as chronic conditionscausing major activity limitation among persons of all ages ( Table 4-1 ) (La Plante, 1989a) and rank ninth and eighth, respectively, as conditions thatcreate a need for assistance in carrying out basic life activities. Disability years, a measure introduced by Houk and Thacker (1989), represents the number of years people survive with disabilities and thusprovides an estimate of the public health impact of disability. By this measure,developmental and other childhood disabilities accounted for 35 percent of alldisability years in 1986 ( Table 4-2 ). This highlights the importance of preventing childhood disabilities, because significant gains in this area will have a ''multiplier effect," substantially decreasing the number of disability years. The national costs of caring for children with developmental disabilities are substantial. Data from the 1980 National Medical Care Utilization and Expenditure Survey (NMCUES) indicate that children who experiencelimitations in normal activities use more medical services than other children,resulting in significantly higher health costs for this group (Newacheck and Mc Manus, 1988). Of an estimated total of $40. 5 billion spent on health care for all children under the age of 21 in 1988 (based on updated 1980 National Medical Care Utilization and Expenditure Survey data), approximately $4. 4 billion was spenton children with chronic disabling conditions. Thus an average of $1,406 wasspent on each child with a chronic disabling condition, compared with an average of $487 for other children. Four percent of those under the age of 21 accounted for nearly 11 percent of total health care expenditures for thatpopulation (Newacheck and Mc Manus, 1988). However, these cost figuresunderestimate the individual and total charges because of the significantchanges in medical care costs and out-of-pocket expenditures since 1980. A 1986 study of state, local, and federal government expenditures on institutionalization, income maintenance, and special education revealedcombined spending of $16. 5 billion in 1984, a 23 percent increase over 1979. These figures represent $7. 28 billion in federal expenditures, $6. 08 billion in state expenditures, and $3. 12 billion in local expenditures (Braddock and Hemp, 1986). The following section provides a descriptive epidemiology of developmental disability. Epidemiology of Developmental Disabilities Clinical disorders and diseases associated with developmental disability can be categorized by time of onset as follows: hereditary disorders, early PREVENTION OF DEVELOPMENTAL DISABILITIES 110About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DEVELOPMENTAL DISABILITIES 111About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
alterations of embryonic development, late pregnancy or perinatal conditions, acquired childhood conditions, and conditions of unknown etiology. Table 4-3 presents these categories of origin, associated causes or pathologies, and some examples of conditions and their estimated prevalences in the United States. This is a slightly modified scheme from that of Crocker (1989) in thatthere is no category for environmental problems and behavioral syndromes; these have been primarily subsumed under the acquired childhood condition category. The following sections present general descriptions of thesecategories and some examples. TABLE 4-2 Estimated Effect of Disability in the United States, in Terms of "Disability Years" Years of Disability Age of Onset Number of Persons (millions)Percent of Persons with Disability Survival(years) Number(millions) Percent Birth-15 years5. 6 20 50 280 35 16-34 years7. 0 25 40 280 35 35-54 years6. 4 23 25 161 20 55 years and older8. 7 31 10 87 10 SOURCE: Houk and Thacker, 1989. Hereditary Disorders Some conditions originate prior to conception in the genotype of the parents. These conditions often have multiple somatic effects, but variation inexpression is common as a result of single-gene interactions with other genicand environmental forces. The underlying causes or pathologies of theseconditions are metabolic disorders, single-gene abnormalities, chromosomeabnormalities, and polygenic familial syndromes. Fragile X Syndrome Fragile X syndrome, a hereditary disorder caused by a chromosomal abnormality, is a common cause of mental retardation amongmales (Friedman and Howard-Peebles, 1986). Estimates of fragile X prevalencein males range from 0. 5 to 0. 9 per 1,000 (Blomquist et al., 1983; Froster-Iskenius et al., 1983; Herbst and Miller, 1980; Sutherland, 1982). Diagnosis ismade by laboratory identification of the characteristic fragile site on the Xchromosome or by inference from the pedigrees of affected family members. PREVENTION OF DEVELOPMENTAL DISABILITIES 112About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF DEVELOPMENTAL DISABILITIES 113About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Early Alterations of Embryonic Development Circumstances in early gestation can affect mitosis and embryogenesis. Generally, the resulting conditions are relatively stable after birth. Theunderlying causes or pathologies of these conditions are chromosomal changes,intrauterine toxicity, intrauterine infection, and structural malformation. Fetal Alcohol Syndrome Fetal alcohol syndrome (FAS) is a condition caused by intrauterine toxicity. FAS is diagnosed when infants havecharacteristic dysmorphic features and when a history of maternal alcohol usein early pregnancy is determined. Infants with FAS have prenatal onset growthdeficiency, facial abnormalities, and mental retardation. Congenitalmalformations, especially microcephaly, are common (Goodman and Gorlin,1983; Smith, 1976). The national prevalence of FAS is estimated to be 1. 4 per1,000 live births. FAS rates among blacks are as much as six times higher than those for whites; among Native Americans the prevalence is 30 times greater (Chavez et al., 1988). PREVENTION OF DEVELOPMENTAL DISABILITIES 114About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
FAS is only one of a number of adverse outcomes associated with alcohol use in pregnancy. Mental retardation, in the absence of FAS, and learningdisorders are other disabling conditions that become apparent in the school-ageyears (Streissguth et al., 1989). The cause of mental retardation and learning disorders in children of women who use alcohol during pregnancy is often not clear. More study isneeded to determine the contribution of maternal use of illicit drugs (especiallycocaine) —often associated with heavy alcohol use —in the etiology of central nervous system impairment. Children of parents who use alcohol and illicit drugs have an increased risk for child abuse or neglect (Orme and Rimmer, 1981), which can also cause central nervous system impairment. Additionalwork is needed in the area of postnatal parental behavior that increases thevulnerability of this group of children. Down Syndrome Children with Down syndrome, a condition caused by chromosomal changes, have a characteristic facies and almost always havemental retardation (Cicchetti and Sroufe, 1976; Dahle and Mc Collister, 1986). The presence of a third chromosome 21 is diagnostic for the condition. The riskof Down syndrome increases with the age of the mother from rates of less than 1 per 1,000 pregnancies among women in their twenties, to more than 10 in 1,000 among women over 40 years old (Hook and Lindsjo, 1978). In the United States today, the prevalence of the condition is 1 per 1,000 live births (Centersfor Disease Control, 1988b), a decrease from the prevalence rates of more than2 per 1,000 observed in earlier decades. Eighty-seven percent of children with Down syndrome survive to at least age 5 years; most deaths are due to heartmalformations (Masaki et al., 1981). Persons with Down syndrome are at riskfor developing hypothyroidism (Cutler et al., 1986) and instability of the neck(Van Dyke and Gahagan, 1988), as well as Alzheimer disease (Miniszek, 1983)for those living into their forties. Late Pregnancy or Perinatal Conditions During gestation and after morphogenesis, fetuses undergo a relatively long period of growth and development. If this growth period ends prematurely,the result is small, low-birthweight babies with increased vulnerabilities. Theunderlying causes of these conditions are prematurity, perinatal hypoxia, andinfection. Perinatally Acquired Human Immunodeficiency Virus Infection Data from the Centers for Disease Control (CDC) national serosurveys suggest an HIVseroprevalence rate of 1. 5 per 1,000 among women delivering liveborn babiesin the United States. Approximately one-third of these pregnancies PREVENTION OF DEVELOPMENTAL DISABILITIES 115About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
result in HIV infection of the infant as well. Thus, in 1990, between 1,500 and 2,000 infants (0. 5 per 1,000 live births) are expected to develop perinatallyacquired HIV infection. The clinical course of HIV infection in children is varied. Belman and colleagues (1985) report that 90 percent of infants with HIV infection hadcentral nervous system involvement including developmental delay, loss ofdevelopmental milestones, microcephaly, and encephalopathy. Acquired Childhood Conditions Many postnatal hazards can modify the body's development during childhood and do damage, from which varying degrees of recovery are possible. The underlying causes of these conditions are postnatal infection, childhoodinjury, environmental toxicity, and psychosocial disadvantage. Traumatic Brain Injury It has been estimated that 2. 2 per 1,000 children (birth through 19 years) each year have traumatic brain injury (Centers for Disease Control, 1990a). Approximately 40 per 1,000 persons sustain atraumatic brain injury in the first 19 years of life (based on annual age-specific rates). The major consequence of traumatic brain injury is death. Other outcomes such as intellectual, motor, and emotional/behavioral impairmenthave not been adequately studied. Existing data suggest that loss ofconsciousness and motor and sensory impairments are usually only short-termsequelae, but intellectual limitation, especially loss of memory andconcentration, is an important long-term complication (Bruce, 1983; Klonoff etal., 1977; Lange-Cosack et al., 1979). It has also been reported that about a thirdof children who remained unconscious for more than one week had IQ scoresless than 70. Some children, however, have long-term intellectual limitation/mental retardation after comas lasting only three to four days (Heiskanen and Kaste, 1974). However, Haas and colleagues (1987) report that 50 percent ofpersons with head injury had a record of poor academic performance before their injury. Lead Toxicity Lead toxicity, an acquired childhood condition caused by environmental lead exposure, is the most common environmental disease ofyoung children. Lead is a toxicant that affects every system in the body and isparticularly harmful to the developing brain and nervous system. It has beenestimated that in 1984, more than 3 million U. S. children (ages 6 months to 5 years) had lead levels high enough to cause clinical or subclinical effects (U. S. Department of Health and Human Services, 1988a). Children in the inner cities,who are already disadvantaged by poor nutrition and other factors, areparticularly vulnerable. PREVENTION OF DEVELOPMENTAL DISABILITIES 116About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Recent prospective studies have shown that adverse effects on the fetus and child probably begin at blood lead levels of 15 micrograms per deciliter (µg/dl) and below. These effects include decreases in IQ (Grant and Davis, 1989),delays in reaching developmental milestones (Bellinger et al., 1987; Vimpani etal., 1989), decreases in birthweight (Bornschein et al., 1989) and in postnatalstature (Schwartz et al., 1986), and shorter gestation (Mc Michael et al., 1986). There may be no threshold for some of the adverse effects of lead. Conditions of Unknown Origin There are a significant number of developmental disabilities for which the etiology remains obscure. These conditions include epilepsy, autism, and muchcerebral palsy and mental retardation. Cerebral Palsy Cerebral palsy (CP) is a group of disorders in which a disease of the brain causes impairment of motor function (Ingram, 1984). Although mobility limitation is the most common result of CP, coexistingmental retardation also occurs in about half of all cases (Mc Donald and Valmassey, 1987). In a review of CP prevalence studies in industrialized countries, Paneth and Kiely (1984) estimate that 2 per 1,000 school-aged children require services. About half of all occurrences of CP are associatedwith underlying prenatal conditions such as intrauterine infection, perinatalanoxia and maternal metabolic disease, and postnatal events such as trauma,infection, toxic exposure, and vascular problems. In the other half of CP cases,no underlying health problem can be identified. There is a common misconception that most CP results from perinatal hypoxia. Blair and Stanley (1988) have shown that perinatal hypoxia was apossible cause of CP in less that 10 percent of children with the disorder. Learning Disorders Learning disorders occur in persons who do not have mental retardation and include conditions such as hyperactivity and attentiondeficit disorder, along with specific "disabilities" of reading, writing, andmathematics. These learning disorders are usually not recognized until the childis academically challenged in school. A prevalence range of 50 to 100 per 1,000children was found in studies reviewed in a 1987 report (U. S. Interagency Committee on Learning Disabilities, 1987). A few factors, such as very low birthweight (Calame et al., 1986; Nickel et al., 1982), fetal alcohol effects(Streissguth et al., 1989), low-lead-exposure syndrome (Needleman et al.,1990), and neurofibromatosis (Stine and Adams, 1989), are known to beassociated with learning disorders, but in most cases the underlying cause isunknown. PREVENTION OF DEVELOPMENTAL DISABILITIES 117About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
There is both a need and a high potential for the prevention of developmental disabilities. The most readily preventable conditions include fetal alcohol syndrome, lead toxicity, many premature births, intrauterine and postnatal infection, and disabling conditions related to psychosocial disadvantage. Although more research is needed to improve interventions, current knowledge is adequate to warrant the expansion of existing prevention programs. Employing the New Model The terms impairment, functional limitation, disability, and handicap are commonly used to describe developmental disabilities. But their use has notbeen consistent, leading to some conceptual confusion. The committee's modelof the disabling process ( Figure 3-3 ) provides a new perspective for assessing and evaluating developmental disability. The model is useful in identifyingsimilarities between developmental disabilities and other disabling conditionsand in improving understanding of developmental disabilities as nonstaticdisabling conditions. As a result, this model should facilitate the developmentof preventive interventions. The clinical conditions described above correspond generally to the first two stages of the model of the disabling process, that is, pathology andimpairment. Thus the prevalence of developmental disability does not equal theprevalence of functional limitation and disability according to the committee'smodel; other measures are needed to describe the prevalence of functionallimitation and disability. Functional limitations associated with developmental disabilities can be described as occurring in three categories: intellectual limitation/mental retardation, mobility limitations, and sensory and communication limitations. (Note that the committee's definition of functional limitation differs from thatused in the Apt Associates report that provided terminology for federallegislation on developmental disabilities. ) Examples of measurements that canbe used for these categories of functional limitation appear below. It isimportant to note that functional limitations in childhood are caused not only by Developmental Disabilities but also by other potentially disabling conditionssuch as congenital heart defects, asthma, cystic fibrosis, and sickle cell anemia. As described earlier, disability is the expression of a functional limitation in a social context, that is, a limitation in performing socially defined roles andtasks. Disability estimates can be made using activity limitation data (asmeasured by the National Health Interview Survey) and school-relatedlimitation data (as measured by the use of special education services). PREVENTION OF DEVELOPMENTAL DISABILITIES 118About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Functional Limitations As noted above, developmental disabilities cause three major types of functional limitation: intellectual limitation/mental retardation, mobilitylimitation, and sensory and communication limitation. Some of the disablingconditions that can cause these functional limitations are discussed below. Monitoring their prevalence, in relation to the categories of origin, should beuseful in developing intervention strategies and evaluating their effectiveness. Intellectual Limitation/Mental Retardation Mental retardation (MR) is often divided into two categories: serious MR (IQ of less than 50) and mild MR(IQ 50 to 70). Serious MR is more likely than mild MR to be associated withdiscernible pathology. Susser and colleagues (1985) cite a range of reportedprevalence for serious MR between 2. 9 and 3. 5 per 1,000 children. In thestudies they examined, about 35 percent of the serious MR was associated with chromosomal changes, between 15 and 20 percent with late pregnancy or perinatal conditions, and between 15 and 25 percent of unknown causes( Figure 4-1 ). Children reared in psychosocially disadvantaged family settings are at greater risk for MR (Butler et al., 1984; Broman et al., 1987; Shonkoff, 1982),but the relationship between socioeconomic risk and mental retardation iscomplex and not well understood. Subtle neurological abnormalities and minorobstetrical risk factors (Zigler and Cascione, 1984) are thought not to besufficient cause (Breitmayer and Ramey, 1986). Comprehensive day care programs have been developed in response to observed differences between homes with and without psychosocialdisadvantage (Ramey and Campbell, 1984). A 13-point improvement in IQscores of low-birthweight children has been reported in a recent trial of suchprograms (Infant Health and Development Program, 1990). Mobility Limitation The prevalence of mobility limitation among children under 18 years of age was 1. 5 per 1,000 (La Plante, 1989b). Walker andcolleagues (1988) studied the underlying health conditions of children usingcrutches and wheelchairs and reported that 43 percent have cerebral palsy, 12percent have spina bifida, and 8 percent have muscular dystrophy ( Figure 4-1 ). Prevalence estimates for these disorders are 2 per 1,000 for cerebral palsy(Kudrjavcev et al., 1983), 0. 4 per 1,000 for spina bifida (Centers for Disease Control, 1988b), and between 0. 02 and 0. 1 per 1,000 for muscular dystrophy (Gardner-Medwin and Sharples, 1989; Tangsrud and Halvorsen, 1989). Sensory and Communication Limitation A range of prevalence between 0. 93 and 2. 3 per 1,000 has been reported for childhood hearing impairments PREVENTION OF DEVELOPMENTAL DISABILITIES 119About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
FIGURE 4-1 Proportions of serious mental retardation, visual, hearing, and motor impairments associated with the various catego ries of origin of developmental disability. PREVENTION OF DEVELOPMENTAL DISABILITIES 120About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
(Figure 4-1 ) (Davidson et al., 1988). Hereditary and other prenatal causes accounted for between 31 and 52 percent of all hearing limitation; latepregnancy and perinatal causes for between 13 and 19 percent; and postnatalcauses for between 5 and 41 percent. The underlying disorder (cause/pathology)was unknown in between 25 and 41 percent of the subjects. In a population-based study of infants and toddlers, Williamson and colleagues reported that 1 child per 1,000 under age three had a severe visionimpairment that could not be corrected ( Figure 4-1 ) (Williamson et al., 1987). Twenty-five percent of these cases were attributable to prenatal disorders, 20percent to late pregnancy/perinatal conditions, and 25 percent to postnatalinfection or injury. The cause was unknown in 15 percent of the cases. Multiple Impairments and Functional Limitations A person who has a serious impairment that causes functional limitation in one area may haveadditional impairments causing other functional limitations. For example, achild with mental retardation may also have mobility limitations caused bycerebral palsy. About two-thirds of all children with developmental disabilitieshave more than one clinical disorder. Of children with mental retardation, 10percent have cerebral palsy (and mobility limitation), 3 percent have serious hearing impairment, 1 percent have visual loss, and 40 percent have emotional or behavioral disorders (Accardo and Capute, 1979). Children with moreserious mental retardation are more likely to have additional functionallimitations. Disability At least two survey indicators are useful in determining childhood disability: activity limitation (measured in the National Health Interview Survey) and use of special education services (measured by public educationagencies). Based on the 1983-1985 National Health Interview Surveys, 40. 2children per 1,000 aged 5 through 17 were limited in their major activities(La Plante, 1988). The prevalence of children who needed help to carry outactivities of daily living (ADL) was 3. 3 per 1,000. Of the 15 per 1,000 childrenaged 5 through 17 who were found to have mental retardation, 90 percent (13 per 1,000) were limited in their major activity (school), and 6 percent (0. 9 per 1,000) needed help in ADLs. Of the 2. 4 per 1,000 children who had cerebralpalsy, 74 percent (1. 8 per 1,000) had activity limitations, and 13 percent (0. 3per 1,000) needed help in ADLs. Children with mental retardation and cerebralpalsy accounted for 26 and 10 percent, respectively, of all children needing helpin ADLs. The prevalence of children aged 3 through 21 who received special educational services in 1987-1988 was 66 per 1,000 (U. S. Department of PREVENTION OF DEVELOPMENTAL DISABILITIES 121About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Education, 1989b). Forty-seven percent of these children were categorized as learning disabled, a prevalence of 31 per 1,000 children. Fourteen percent werelabeled mentally retarded, a prevalence of 9. 6 per 1,000 children. Secondary Conditions When more than one potentially disabling condition is present in the same individual, it is important to determine whether the conditions had differentorigins or whether one led to the other. This distinction has importantimplications for prevention. If one condition, such as mobility limitation, is anantecedent to another, such as decubitus ulcers, then elucidating the causalmechanism can help to identify effective interventions to prevent development of the secondary condition. In children with cerebral palsy and mobility limitations, for example, muscle contractures that further limit mobility aresecondary conditions and can be prevented. Data are limited, however, onsecondary conditions, and it is often difficult to differentiate between dependentand independent conditions. The Centers for Disease Control (CDC) isattempting to identify and classify preventable secondary conditions associatedwith cerebral palsy. Five types have been tentatively identified:neuromusculoskeletal, health maintenance, psychosocial, communication, andquality of life (see Table 4-4 ) (M. Pavin, Centers for Disease Control, personal communication, 1990). An improved understanding of the relationships that exist between clinical conditions and the model for the disabling process is needed to facilitate the development and evaluation of improved intervention strategies. Prevalencedata on functional limitations and disabilities need to be evaluated in relation to the categories of origin of developmental disability, the progression in the disabling process, and the interactions with risk factors and quality of life. Research should include assessments of risks associated with socioeconomic and psychosocial disadvantage, the effectiveness ofhabilitative services, and the identification of secondary conditions. APPROACHES TO PREVENTION The development of successful prevention strategies in recent decades is illustrated by the history of the prevention of kernicterus and cerebral palsy from Rh hemolytic disease. Prior to the Second World War, there was virtually no understanding of the cause of the hemolytic anemia and severe jaundice thatproduced some cases of cerebral palsy. Progress in understanding blood typesduring the war led to the discovery that the hemolytic anemia was caused by agenetic incompatibility between the mother and the PREVENTION OF DEVELOPMENTAL DISABILITIES 122About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
fetus. Subsequently, exchange transfusions after birth became a common procedure to prevent toxic brain effects that caused cerebral palsy. TABLE 4-4 Secondary Conditions, Their Associated Risk Factors, and Interventions in Persons with Cerebral Palsy Secondary Condition Risk Factors Recommended Interventions Neuromusculoskeletal Deformities of hip, knee, spine Poor positioning Range of motion exercises; positioning; wheelchair type Falls Deconditioning Treatment selection that recognizes short-and long-term consequences Health maintenance Respiratory problems Dysphagia Food selection; oral/ swallowing therapy Skin breakdown Compromised skin integrity Nutrition, positioning Psychosocial Low self-esteem, depression Inadequate modes of communication; limited community integration Augmentive communication devices; access and training; peer interaction at all ages Limited communication Unintelligible expressive language Speech and language skills therapy; use ofaugmentive communication devices; access and training Quality of life —limited integration, independence, and productivity Lack of employment opportunities; lack of community access(e. g., inadequate transportation and architectural barriers)Supported employment; community educationpolicy; legislation and regulation The late 1960s and early 1970s saw further advances in the prevention of hemolytic anemia that resulted from several factors: an understanding of thebiology of blood types, the development and use of an Rh immune globulin,and a change in reproductive patterns (women began to have fewer babies). Thecondition is now virtually eliminated. Thus the battle against this geneticallycaused developmental disability has progressed from treating a condition toprevent the impairment to preventing the underlying pathology. Many types of interventions reduce the incidence of potentially disabling conditions among infants and children. As seen in Table 4-5, genetic interventions are the prime method when the underlying condition is a hereditary PREVENTION OF DEVELOPMENTAL DISABILITIES 123About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
disorder. Immunization and avoidance of prenatal toxic exposures are important measures to prevent early alterations in embryonic development. Programs thatreduce the rate of prematurity prevent some disabling conditions associatedwith the perinatal category of origins. Medical care, injury control, and familysupport services are examples of interventions to reduce disabling conditionsassociated with acquired childhood conditions. The types of interventions are ranked in three categories according to their effectiveness: those proven to be effective (such as immunizations to prevent congenital rubella); those showingpromise (such as prenatal care to prevent prematurity); and those requiringfurther research (such as periconceptional multivitamin supplementation). Effective secondary preventive strategies include corrective surgery for congenital anomalies, newborn metabolic screening, early detection of serioushearing impairment, and habilitation to reduce limitations in communication. Tertiary prevention includes habilitation, peer support, and prevention ofsecondary conditions in persons with existing disabilities. Preventive interventions can be grouped into four general categories: health care, education, environmental control and adaptive assistance, and peersupport. Some examples of each of these categories are presented below. Health Care Interventions Health care before pregnancy (preconception care) can ameliorate disease, improve risk status, and help prepare a family for childbearing (Institute of Medicine, 1988c). The components of preconception care include healthpromotion activities and interventions to reduce risk. Such care for women withknown medical conditions may prevent anomalies or illnesses in the newborn. A discussion of other health care interventions follows. Prenatal and Well-Child Care Preventive interventions have been developed for normal health care practices in pregnancy, during the prenatal and perinatal periods, and duringchildhood. Recommendations on the content of such programs, includingspecific risk assessment and health promotion activities, have been developedby the Institute of Medicine (1985) and the U. S. Public Health Service (1989),among others. Risk assessment is done by evaluating an individual's medical history and conducting a physical examination. Pertinent elements of history, such as prematurity in a previous pregnancy or genetic disease in a familymember, can be indications for special care. During the physical examination,blood pressure, weight gain, and pelvimetry findings can also signal the needfor intervention. PREVENTION OF DEVELOPMENTAL DISABILITIES 124About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 4-5 Known Risk Factors and Types of Interventions That Reduce the Incidence and Severity of Certain Conditions Condition Risk Factor Type of Intervention HEREDITARY DISORDERS Metabolic disorders Maternal phenylketonuria Maternal diet Program to inform young women withphenylketonuria of preventive dieta Hurler syndrome Family history Laboratory marker Genetic interventionsb Tay-Sachs disease Family history Laboratory marker Genetic interventionsb Screening and pregnancy planningb Ashkenazi Jews Other single-gene abnormalities Muscular dystrophy Family history Laboratory marker Genetic interventionsa Cystic fibrosis Family history Laboratory marker Genetic interventionsa Sickle cell anemia Family history Laboratory marker Genetic interventionsb Hemophilia Family history Laboratory marker Genetic interventionsb Chromosomal abnormalities Fragile X syndrome Family history Laboratory marker Genetic interventionsa Population screening and pregnancy planningc EARLY ALTERATIONS OF EMBRYONIC DEVELOPMENT Chromosomal changes Down syndrome Maternal age Laboratory markers Genetic interventionsb Toxic exposure syndromes Fetal alcohol syndrome Maternal alcohol use Parenting supportsa Child placementa Family planninga Addiction treatment programsa Kernicterus Rh hemolytic disease Rh immune globulinb PREVENTION OF DEVELOPMENTAL DISABILITIES 125About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Condition Risk Factor Type of Intervention Accutane embryopathy Maternal exposure Labeling and patient informationa Counselinga Intrauterine infection Congenital rubella syndromes Rubella exposure Immunizationb Congenital syphilis Maternal infection Prenatal detection and maternal treatmentb Congenital malformations All types Maternal diabetes Prenatal medical managementa Spina bifida Family history Laboratory marker Genetic interventionsb No maternal vitamin use Periconceptional vitamin supplementationc LATE PREGNANCY AND PERINATAL CONDITIONS Premature birth Lack of prenatal care Prenatal carea Adolescent pregnancy Adolescent pregnancy prevention programsa Perinatal hypoxia High-risk pregnancy Prenatal carea Tertiary perinatal carea Infection Perinatally acquired HIV infection Maternal infection Counselingb Congenital herpes Maternal infection Family planninga Cesarean deliverya ACQUIRED CHILDHOOD CONDITIONS Postnatal infection Bacterial meningitis HFlu immunity Immunization a Poliomyelitis Immune status Immunizationb Measles encephalopathy Immune status Immunizationb Mumps encephalopathy Immune status Immunizationb Childhood injury Unintentional head trauma and spinal cord injury Seat belts and childsafety seats Child safety seat legislationb PREVENTION OF DEVELOPMENTAL DISABILITIES 126About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Condition Risk Factor Type of Intervention Child safety seat programsa Motorcycle helmets Helmet legislationb Bicycle helmets Bicycle helmet programsa Unsafe diving Health educationa Playground hazards Surface modificationb Child abuse (physical) Family history of violence Impoverished family environment See deprivational syndromes below Parental alcohol and drug addiction Addiction treatment programsa Adolescent parents Adolescent pregnancy prevention programsa Childhood disability for all above risks Respite carea Near drowning Unsupervised swimming Health educationa Unfenced home pools Local ordinancesa No caretaker CPR skills CPR training programsa Burns Hot water temperature Health educationa Local ordinancesa Environmental toxicity Lead exposure toxicity Environmental lead in paint, dust, and air Abatement in housinga Low-lead gasolinesa Lead-free paintsa Protection in workplaceb Deprivational syndromes Impoverished family environment Head Startb Comprehensive day carea Food supplementation for women and childrena Housing programsa Social servicesa a Interventions that are promising and should be implemented, but that should also be monitored closely and evaluated. b Interventions that have been proven effective and that should be implemented and monitored. c Interventions that require further research. PREVENTION OF DEVELOPMENTAL DISABILITIES 127About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Guidelines on preventive measures in labor and delivery procedures, infection control in nurseries, and other areas have been issued by the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists (Frigoletto and Little, 1988). A recent report by the U. S. Preventive Services Task Force (U. S. Department of Health and Human Services, 1989a) also includes sections on care during the prenatal period, at birth, and during childhood. There is a need to increase the use of preventive measures in prenatal care and well-child care. This could be accomplished by increasing public awareness of the need for family planning and prenatal care and byensuring that every child who has, or is at risk of developing, a developmental disability has access to continuous, comprehensive preventive and acute health services. Genetic Interventions Major advances in genetic screening during the past 20 years have allowed families and physicians to recognize hereditary and other genetic disorders at very early stages, thereby facilitating preventive and treatment decisions for patients earlier in the course of the condition. During the next decade, geneticinterventions are likely to play a major role in reducing the incidence andseverity of developmental disabilities. Genetic screening has reduced the birth incidence of Down syndrome, other chromosomal aberrations, and inborn errors of metabolism such as Tay-Sachs disease. The success of these interventions highlights the responsibility of health care providers to counsel potential parents about test results and discusswith them a range of possible options. Some tests can give a definitivediagnosis for a disease, whereas others, such as maternal serum alpha-fetoprotein screening, can give only an indication of risk. Clinicians must beable to provide sufficient detail about risk and therapy to provide couples with arange of reproductive options. In certain circumstances, the availability ofpregnancy termination may be an important option to some parents. It isimportant to note, however, that this option in health care delivery does notprevent the occurrence of disabling conditions —only their birth incidence. Continued success with genetic technology opens the way for rapid gains in carrier screening for hundreds of genetic diseases known to cause developmental disabilities, and probably for the many genetic diseases that are yet to be discovered as causes of developmental disabilities. Understanding thegenetic basis for these diseases may one day lead to primary prevention or truecures through gene therapy. Newborn screening for metabolic conditions also shows promising developments for secondary prevention. For example, genetic technology is currently PREVENTION OF DEVELOPMENTAL DISABILITIES 128About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
used to identify children who will develop mental retardation upon exposure to phenylalanine. The next decade is likely to see a growing list of conditions thatare caused by susceptibility of the rare individual to common environmentalexposures. Interventions will be developed to provide early identification andappropriate avoidance of exposures. Genetic interventions, as part of preconception counseling and prenatal care, can play a major role in reducing the birth incidence of disabling conditions. Genetic screening and counseling, with associated services, should be accessible to all who choose to use them. Using sensitivity and care, physicians should discuss all possible interventions with prospectiveparents. Multidisciplinary Care A 1987 report by the U. S. surgeon general emphasized that health care for children with disabling conditions should be delivered in a family-centered,community-based system. The Association for the Care of Children's Healthand the Maternal and Child Health Bureau have developed specific recommendations to ensure that health care delivery is flexible, accessible, and responsive to family needs (Shelton et al., 1987). Moreover, parents should beinvolved in all health care decision making, and physical therapists, speechtherapists, orthopedic surgeons, and other involved health professionals shouldcoordinate the delivery of care. State systems of services for children with, or at risk of developing, chronic and disabling conditions must be expanded to provide adequate multidisciplinary care for the prevention of developmental disabilities and associated secondary conditions. Education Head Start and Comprehensive Day Care Head Start programs are designed to provide educational opportunities to three-and four-year-old children from low-income families (Barnett, 1985;Lazar et al., 1982). Children in Head Start programs are better prepared forschool, demonstrate less need for special education, and have less chance ofbeing retained in a grade. Success in school was associated with lower rates ofdelinquency, teenage pregnancy, and welfare usage, and with higher rates ofhigh school completion and employment. Comprehensive day care programs for disadvantaged children younger than age three also show promise. The Infant Health and Development Program PREVENTION OF DEVELOPMENTAL DISABILITIES 129About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
(1990) reported that such programs improved the developmental outcomes of low-birthweight and premature infants. Infants from one to three years old whowere assigned to the intervention, which included attending a childdevelopment center five days a week, showed improved IQ scores. Positive effects from these programs are possible if they are adequately funded and staffed with well-trained, competent teachers (U. S. Department of Health and Human Services, 1985; Schweinhart and Weikart, 1986). Head Start and comprehensive day care programs have been shown to be effective interventions in reducing the incidence of school failure. Early educational interventions should continue to be implemented but should beevaluated further. Community Educational Priorities Communities can promote prevention in a broad variety of settings, such as clinics in public schools. Community leaders also have successfully usedpublic school curricula, newspapers and other media, churches, and the businesssector to promote information in priority areas. Health promotion and diseaseprevention education should be an integral part of the curriculum in publicschools and should include the rationale for preventive measures such asimmunization and newborn metabolic screening. Recent efforts to evaluate the effectiveness of school-based health education will enhance the quality of the prevention science base (Kolbe, 1986),and the National Cancer Institute's program to assess the impact of schoolcurricula on student health behavior provides a useful model for evaluatingprevention in the developmental disabilities area. In addition, several of the Health Objectives for the Year 2000 (U. S. Department of Health and Human Services, 1990) focus on increasing instruction in specific prevention activities. Many of these objectives are relevant to developmental disabilities prevention. The effectiveness of school-based programs in health education should be reviewed and improved as necessary to educate children about prevention including the prevention of disability. Access to Public Education Landmark 1975 legislation (P. L. 94-142) mandated the education of children with disabilities in the least restrictive environments and required theprovision of special education services to make school completion possible. Although there is considerable variability in placement policies among schooldistricts, on average, 27 percent of ''students with handicaps" were placed PREVENTION OF DEVELOPMENTAL DISABILITIES 130About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
in regular classrooms in 1986-1987 (U. S. Department of Education, 1989b). Special resource rooms were provided for another 43 percent, 25 percent wereplaced in separate classes, and 4 percent were placed in separate schools. Lessthan 2 percent of special educational services were provided in homes,hospitals, residential facilities, or correctional facilities. Sixty percent of "handicapped students" aged 16 to 21 graduated with a diploma or certificate. Twenty-five percent dropped out. The highest dropoutrates were reported among the "emotionally disturbed" (42 percent) and the"learning disabled" (26 percent) (U. S. Department of Education, 1989a). In 1986, amendments to the 1975 legislation (P. L. 99-457) encouraged states to identify children with disabling conditions as early as possible andprovide early intervention services (Smith, 1976; De Graw et al., 1988). Statesare now discussing how to implement these programs. Environmental Interventions Environmental Control Environmental control programs are designed to protect children from exposure to toxicants such as lead and asbestos. With respect to lead, preventionstrategies focus on efforts to identify major environmental sources of leadexposure (such as house paint, automobile emissions, and water) and to identify children with elevated blood levels of lead (Centers for Disease Control, 1985). Federal, state, and local regulations are directed at keeping environmentalexposures at safe levels. Childhood lead exposure is an important cause of preventable developmental disability, and screening programs in high-risk areas should be expanded. Surveillance also should be established to monitor childhood lead poisoning more closely, and governmental health, housing, and environmental agencies should work together to increase the removal of lead paint and dust in high-risk areas. Accessibility and Adaptation Methods of adaptive assistance that reduce secondary conditions are evolving, including personal care attendants, respite care, and a vast array ofassistive technology. Communication devices, feeder plates, computers, andelectric wheelchairs are among the most widely used assistive technologies, butdevices also can be customized for individuals with unique needs. The impactof some environmental obstacles, such as curbs and buildings, has beenlessened, but many obstacles remain, including inadequate transportation inrural areas. PREVENTION OF DEVELOPMENTAL DISABILITIES 131About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Environmental modification and adaptive assistance are essential components of a prevention program focused on developmental disability. Peer Support Groups Organizations such as local Parent to Parent groups, Associations of Retarded Citizens groups, United Cerebral Palsy Associations, and Independent Living Centers provide community-based peer support for individuals withdisabling conditions and their families. These groups provide an invaluableresource for emotional support and information. For example, support groupsare the major source of referrals to professionals who specialize in care forpersons with disabling conditions, and to systems of health care reimbursement. In addition, support groups are excellent sources of advice on careeralternatives, training, and job opportunities. Peer support groups also play a major advocacy role. Through the concerted efforts of several such groups, legislation has been adopted toimprove access to public buildings and transportation. These groups also havebeen instrumental in developing many state-based disability preventionprograms. Persons with disabling conditions, their families, personal attendants, and advocates need improved access to information and training in disabilityprevention. In particular, there is a need for enhanced disability advocacy, information, and support in many rural communities where physical distances limit group interactions. OPPORTUNITIES AND NEEDS Current efforts in the prevention of developmental disabilities as described above provide numerous opportunities. There is much room for improvement,however. Some of the opportunities and needs that have been identified aredescribed below, organized into five categories: organization and coordination,surveillance and epidemiology, research, access to care and preventive services,and professional education. Organization and Coordination The vast array of disability-related activities in both the public and private sectors is evidence in itself of the need for coordination. There are numerousexamples of duplicate and underutilized services. Efforts are under way atnational and state levels to better coordinate prevention programs. Some ofthese are briefly described below. PREVENTION OF DEVELOPMENTAL DISABILITIES 132About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
National Coordination National Council on Disability The National Council on Disability is a presidentially appointed council that has made prevention of disability one of itshighest priorities. Its efforts include promoting the development of a nationaldisabilities prevention plan. In addition, the council has worked with the Officeof Disease Prevention and Health Promotion to cosponsor a federal task force tocoordinate disability prevention planning. The National Coalition for the Prevention of Mental Retardation The National Coalition for the Prevention of Mental Retardation comprisesrepresentatives from the President's Committee on Mental Retardation, the American Academy of Pediatrics, the American Association on Mental Retardation, the Association for Retarded Citizens of the United States, and the American Association of University Affiliated Programs. This group meets regularly to discuss major activities in the area of developmental disabilities prevention. The Office of Disease Prevention and Health Promotion In coordinating the development of the Health Objectives for the Year 2000 (U. S. Departmentof Health and Human Services, 1990), the Office of Disease Prevention and Health Promotion has promoted objectives that address disability prevention. These objectives will prescribe measurable improvements in health status, riskfactor reduction, health education, and preventive services related to theprevention of disabilities. State-based Coordination States that accept planning money under federal legislation (P. L. 99-457) must establish interagency coordinating councils. Under the direction of a stateagency (usually the department of education or health), representatives of stategovernment divisions dealing with childhood disability interventions must meetregularly to discuss the design of intended service programs. A new systematic approach to the prevention of developmental disabilities has been launched under recent federal legislation (P. L. 100-102). Thisapproach involves cooperative agreements between the CDC and the respectivestates to develop coordinated state disability prevention programs. A major goalof this effort is to develop a scientific data base on incidence, prevalence, andrelative effectiveness of intervention strategies. The many disability-related activities in the public (federal, state, and local levels) and private sectors need to be coordinated with additional emphasis on prevention. PREVENTION OF DEVELOPMENTAL DISABILITIES 133About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Surveillance and Epidemiology The creation of effective preventive measures requires an informed analysis of data on the types and prevalences of disabling conditions and theirunderlying conditions. Surveillance data on younger children can be used toestimate their potential needs in subsequent years. Surveillance data alsoprovide the basis for epidemiologic research to evaluate preventive measuresand to discover more causes of developmental disabilities. Analysis of community-and state-based surveillance data can provide the basis for etiologic research (Thacker and Berkelman, 1988). The systematic collection ofsurveillance data should always be examined with the goal of spreadingknowledge about the availability of health services. Several sources ofnationally published data are described below to illustrate the variety ofavailable data and the need to coordinate data collection and analysis. Centers for Disease Control CDC has an established program in epidemiologic research and birth defects surveillance and is building on this experience to study otherdevelopmental disabilities such as mental retardation and cerebral palsy. Thebirth defects surveillance program has two elements: the Metropolitan Atlanta Congenital Defects Program (MACDP), and the national Birth Defects Monitoring Program (BDMP). Developmental disabilities are being studied in the Metropolitan Atlanta Developmental Disability Study (MADDS). Metropolitan Atlanta Congenital Defects Program MACDP is a population-based active surveillance program in metropolitan Atlanta designedto provide reliable prevalence estimates of several hundred types of birthdefects. Because many prevention programs and environmental agents that existin Atlanta are also found throughout the country, this program has served as a source of data for national policy decisions. Reports based on MACDP data have shown no increased risks for birth defects associated with maternal Bendectin exposure (Cordero et al., 1981) orwith paternal opportunity for exposure to Agent Orange (Erickson et al., 1984). Another study showed that women who took multivitamin supplements prior topregnancy were only half as likely as unsupplemented women to have an infant with spina bifida (Mulinare et al., 1988). Birth Defects Monitoring Program The BDMP provides a national perspective on birth defects, using hospital discharge diagnoses from largenumbers of hospitals. Comparison of BDMP birth defect rates with thoseobtained from MACDP is helpful in interpreting national findings andmonitoring trends over time. Patterns discerned from these data include decreasing trends of anencephaly and spina bifida (Edmonds and Windham, 1985) and PREVENTION OF DEVELOPMENTAL DISABILITIES 134About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
increasing trends in renal agencies and ventricular septal defect (Centers for Disease Control, 1988b). These and other data gained from birth defects surveillance programs potentially can be used to inform eligible families of the availability of clinicalservices. Iowa and Colorado are investigating the feasibility of usingsurveillance data to refer families to early intervention programs. Metropolitan Atlanta Developmental Disabilities Study Birth defects are a major component of developmental disabilities and are easier to ascertain on apopulation basis than are non-birth defect developmental disabilities. Surveillance methods are now being developed in this more difficult area. MADDS is a prevalence survey of five developmental disabilities (mentalretardation, cerebral palsy, severe hearing and vision impairments, and seizure disorders) in metropolitan Atlanta. In addition, cases and controls are being studied to search for causes. There is a need for a national surveillance system to monitor the incidence and prevalence of developmental disabilities. The CDC surveillance systems for birth defects and developmental disabilities represent an important base from which to develop this capacity. National Center for Health Statistics In addition to its birth defects and developmental disabilities surveillance efforts, the CDC has several other programs for collecting information on healthstatus. These programs, directed by the National Center for Health Statistics(NCHS), which also compiles vital statistics data, can be a rich source ofinformation on disability. The most important of the NCHS surveillance effortsare the National Health Interview Survey (NHIS), the 1980 National Medical Care Utilization and Expenditure Survey (NMCUES), the National Maternaland Infant Health Survey, and the National Health and Nutrition Examination Surveys (NHANES). National Health Interview Survey The NHIS has been conducted annually since 1957, with approximately 50,000 households providing information in apersonal interview. A core questionnaire solicits data on perceived health status,limitation of activity, disability days, the incidence of acute conditions,prevalence of selected chronic conditions, and health care utilization. Conditions such as mental retardation, cerebral palsy and sensory impairmentare included in the core data, but no information on underlying clinicaldisorders is gathered. A Child Health Supplement to the NHIS, added in 1981and 1988, solicits information on childhood conditions. 1980 National Medical Care Utilization and Expenditure Survey NMCUES was a 1980 study that collected data on disability, health status, acuteand PREVENTION OF DEVELOPMENTAL DISABILITIES 135About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
chronic conditions, use of health services, and source of expenditures from 17,000 noninstitutionalized civilians. NMCUES was replicated, in part, by the1987 National Medical Care Expenditures Survey conducted by the National Center for Health Services Research. National Maternal and Infant Health Survey Ten thousand mothers of liveborn babies were interviewed in this 1988 survey. A longitudinal follow-upstudy of this group is planned in 1990. This study will help establish expecteddistributions of health status measures, but the sample size will not allowadequate statistical description of individual developmental disabilities. National Health and Nutrition Examination Surveys Data on hearing, vision, and intelligence were collected in three cycles of NHANES studiesbeginning in 1971, providing another source of normal descriptive data. Thesamples studied in NHANES I, NHANES II, and Hispanic HANES wereapproximately 20,000 (1971-1974), 20,000 (1976-1980), and 12,000(1982-1984), respectively. National Institutes of Health National Institute of Child Health and Human Development NICHD, part of the National Institutes of Health (NIH), has supported research on the geneticand environmental causes of mental retardation, autism, epilepsy, and cerebralpalsy (National Institutes of Health, 1989). NICHD-funded investigators in 12mental retardation research centers carry out biomedical and behavioral studiesof these issues. Biomedical research has focused on applications of new genetic approaches to investigate a variety of developmental disabilities. NICHD Mental Retardation Research Centers have also provided a setting forlongitudinal studies of environmental and social factors, along with research onsecondary conditions and quality of life issues. NICHD also houses the new National Center for Medical Rehabilitation Research (see Chapter 8 ). National Institute of Neurological Disorders and Stroke Another branch of NIH, NINDS funds biomedical research on brain development during infancyand childhood and on disorders that influence cognition, learning, behavior, andperformance (NIH, 1989). NINDS-supported investigators study conditions thatdamage the central nervous system early in life and contribute to mentalretardation. Bureau of Maternal and Child Health and Resources Development To complement their health service delivery program, the Health Resource Services Administration's BMCHRD administers a grant program PREVENTION OF DEVELOPMENTAL DISABILITIES 136About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
for research (BMCHRD, 1989). These grants support a broad spectrum of studies, ranging from descriptive epidemiology to evaluation of majorpreventive interventions. Evaluation of interventions to reduce the incidenceand severity of secondary conditions is also a priority in the BMCHRD researchprogram. Department of Education National Institute on Disability and Rehabilitation Research The NIDRR administers two grant programs: one to support research and training centers,and a second to promote individual research. The research and training centers,which are principally university based, recently have focused on theidentification and treatment of secondary conditions. The NIDRR is alsopromoting the development of assistive technology and is cofunding (with the National Institute of Mental Health) a study of service systems used by children with emotional disorders. Office of Special Education Programs The U. S. Department of Education supports research activities on the effectiveness of special education andpublishes annual data on the use of special educational services. The State/Federal Evaluations Studies Program funds studies of the effectiveness ofprograms implemented under the Education of the Handicapped Act. The Department of Education publishes special education statistics in an annual report to Congress. Use of services is categorized by type of impairment(e. g., mental retardation, learning disorders, hearing and visual impairment). National data are difficult to interpret because case definitions may vary greatlyamong local school districts. State-and Local-level Data Bases Disability data are collected at the state and local level by a number of health and education agencies. Some states have begun interagencycollaboration to share data to improve planning and inform families of availableservices. For the most part, however, data are used only within the agency thatcollected them. There is a great potential for increasing the applications of these data for both service and research purposes. More complete discussions of these varieddata sets are provided by Gortmaker and Walker (1984) and by Crocker (1986)in his widely used unpublished article, "Data Collection for the Evaluation of Mental Retardation Prevention Activities: The Fateful Forty-three. " Birth and death records are usually maintained by the state health agency. The number of annual births, by state and region, is often used with establishedprevalence rates to calculate the expected number of persons with specificpotentially disabling conditions. Such synthetic estimates can provide a basisfor evaluating the comprehensiveness of service programs. PREVENTION OF DEVELOPMENTAL DISABILITIES 137About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
State-and local-level data can provide the foundation for epidemiologic research in selected regions. National surveillance for developmentaldisabilities could benefit from such epidemiologic research. Other Important Data Bases on Developmental Disabilities Several other valuable data bases document important aspects of developmental disabilities. These include surveys by the National Center for Health Services Research, the Social Security Administration, the Health Care Financing Administration, and the Bureau of the Census. Public access data bases are available from the Collaborative Perinatal Study of 50,000 pregnancies in the early 1960s and the Child Health and Development Studies of 20,000 infants in the mid-1970s. Both studies includefollow-up data on cognitive and other neurological development of the childrenstudied. Research Preventive interventions are directed at reducing risk factors. For developmental disabilities, the interactions of biologic, behavioral, andenvironmental (social and physical) risk factors in pregnancy and earlychildhood are of obvious importance. However, because many children withcongenital anomalies are born to parents who practice healthy lifestyles, there isa clear need for identifying risk factors that remain unknown. Maternal use of alcohol during early pregnancy clearly can cause mental retardation. But it is not known why some infants with heavy alcohol exposureduring early pregnancy have no discernible impairment. Understanding thesedifferences may provide clues for prevention. The belief that the nutritionalstatus of the mother is an important determinant of infant health provides thebasis for the Women, Infants, and Children (WIC) food supplementation programs. More can be learned about how to maximize the impact of this intervention. Recent studies show that women who use multivitamin supplements prior to conception and throughout early pregnancy have a lower risk of having aninfant with spina bifida (Smithells et al., 1983; Mulinare et al., 1988; Milunskyet al., 1989). It is not clear whether this protective effect is attributable tovitamin supplements or to some other maternal behavior. More definitivestudies are needed in this important area. Expanded surveillance and epidemiologic research can greatly improve our ability to prevent developmental disabilities. A national surveillance program isneeded to establish the magnitude of the problem, to measure our success inreaching prevention goals, and to determine gaps in prevention stemming frompoorly implemented programs or services. Epidemiologic PREVENTION OF DEVELOPMENTAL DISABILITIES 138About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
research is also needed to identify the causes of the large proportion of developmental disabilities with unknown origins and to find the basis for theexcess of developmental disabilities observed among the socioeconomicallydisadvantaged. Improved and expanded surveillance, epidemiology, and applied research is needed as part of a coordinated research program on the prevention of developmental disabilities. In summary, the goal of these efforts is to prevent developmental disabilities and reduce the incidence and severity of secondary conditions. To reach this goal, effective preventive measures must be implemented. Thescientific base of known preventive interventions should be expanded by furtherevaluating promising strategies and by identifying the preventable risk factorsthat may underlie disabilities of unknown origin and etiology. Comprehensive, coordinated services in health care, education, environmental control, and peer support are encouraged at the federal, state, and community levels. In addition, efforts to monitor prevention programs andestablish uniform definitions and data collection methods will advance programcoordination and accountability. Access to Care and Preventive Services The financing of health care and preventive interventions in the United States is complex, involving contributions from public programs, private insurers, and families ( Table 4-6 ). This complicated strategy makes it increasingly difficult for all citizens to have equal access to health care andpreventive services. Inadequate insurance coverage is the single greatest barrier to equal access to health care, according to a Robert Wood Johnson Foundation study (1987). Lack of insurance coverage for preventive care services for women of childbearing age is a particular problem. More than 14 million women in this category (ages 15 to 44) do not have prenatal or other maternity coverage, 9million are completely uninsured, and 5 million have private insurancecoverage that excludes maternity care (Alan Guttmacher Institute, 1987). The cost of immunizations and other pediatric preventive care is a strong disincentive for uninsured families who might otherwise obtain these services. Nineteen percent of children under 18 (10. 6 million) had no insurance coverage in 1986 (Chollet, 1988). Thirty-three percent of all uninsured children hadfamily incomes below the poverty level. In 1987, children under age 21represented 52 percent of all Medicaid recipients and only 19 percent ofexpenditures. The average payment per child was $742, compared with $3,362for adults (U. S. Health Resources and Services Administration, 1989). PREVENTION OF DEVELOPMENTAL DISABILITIES 139About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 4-6 Various Normal and Special Care Prevention Activities for Developmental Disabilities and Their Usual Sources of Funding Usual Source of Funding for Prevention Activities Type of Care Private Funds (third-party reimbursement)Public Funds (programs of state, city, and volunteer agencies) Normal care Prior to pregnancy Family life education:Avoidance of teen pregnancy; Improved parenting; Role of alcohol inpregnancy; AIDS education Family planning Prenatal Maternal serum alpha-fetoprotein;Ultrasound and amniocentesis as neededa Appropriate prenatal care Perinatal Hospital deliverya Newborn screening PKU, thyroid, etc. Childhood A medical ''home" for each child; Immunization; Automobilerestraints Lead screening; Developmental screening Special care Prior to pregnancy Genetic counseling; Carrier testing Family assistance Prenatal Prenatal diagnosis as needed Family assistance Perinatal Regional newborn intensive care Childhooda Early intervention programs a Effective services for child progress; family support a Usual sources of funding for these activities are both public and private. PREVENTION OF DEVELOPMENTAL DISABILITIES 140About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
To help redress these inequities, governmental programs have been established to provide preventive services to two groups: persons withdisabilities, and families with socioeconomic disadvantage. Becausesocioeconomic disadvantage is a risk factor for disability, persons may bemembers of both groups. Public Programs for Persons with Developmental Disabilities The major federal programs for persons with developmental disabilities are coordinated by the Administration for Developmental Disabilities (ADD) of the Department of Health and Human Services. ADD supports councils in eachstate that plan and coordinate services and advocate changes to reduce thedisadvantage associated with developmental disabilities. ADD also awardsgrants to state offices providing legal and administrative assistance toindividuals with developmental disabilities. Special project grants are awarded to encourage innovative work that will help integrate persons with disabling conditions into the community. ADD also supports the University Affiliated Programs, which offer clinical evaluation for children and training for providersin the field. In addition to ADD-sponsored programs, the Medicaid and Supplemental Security Income (SSI) programs provide medical insurance and incomeassistance for persons with developmental disabilities. Guidelines are expectedto be revised soon that will make more children eligible for SSI support. Several other federal departments offer assistance to persons with developmental disabilities, including the Department of Education (specialeducation and vocational education, among other programs), the Department of Transportation (grants to improve access to public transportation), and the Department of Housing and Urban Development (housing construction loans). Public Programs for Families with Socioeconomic Disadvantage Many preventive services programs for families with socioeconomic disadvantage are jointly financed by federal and state funds. At the federallevel, the Departments of Health and Human Services, Education, and Agriculture are responsible for directing these programs. Agencies at the stateand local levels manage the programs. Table 4-7 contains a partial list of existing programs for the prevention of developmental disability. Within the Department of Health and Human Services, the Maternal and Child Health Bureau (Health Resources and Services Administration)administers block grants that provide major support for state prenatal careprograms, newborn intensive care units, newborn screening, genetic services,PREVENTION OF DEVELOPMENTAL DISABILITIES 141About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 4-7 Partial List of Existing Programs for the Prevention of Development Disabilities Program Activity FEDERAL PROGRAMS Maternal and Child Health Bureau (Health Resources and Services Administration)MCH block grants include major support for states in public prenatal care programs, newborn intensive care units, newborn screening, services for childrenwith special health care needs, etc. Additional elements are provided for genetics programs, AIDS education andprevention, and special projects. Centers for Disease Control Disabilities Prevention Program, epidemiologic studies; injury control program, lead poisoning prevention; childhood immunization, school health,AIDS prevention programs Office of Special Education and Rehabilitative Services P. L. 94-142, P. L. 99-457, and special projects Office of Disease Prevention and Health Promotion Health Objectives for the Year 2000 Office of Human Development Services Head Start, Administration on Developmental Disabilities Health Care Financing Administration Early Periodic Screening, Diagnosis, and Treatment, Medicaid National Institute of Child Health and Human Development Studies in causation, pathophysiology, and intervention; Mental Retardation Research Centers National Institute on Disability and Rehabilitation Research Studies of interventions to reduce secondary conditions in persons with disabilities; assistive technology research National Council on Disability National advocate for federal civil rights legislation for persons with disabilities and for a national disabilities prevention program; introduced concept of prevention of secondary conditions in persons with disabilities President's Committee on Mental Retardation Guidelines for state prevention planning,convenes National Coalition on Prevention of Mental Retardation PREVENTION OF DEVELOPMENTAL DISABILITIES 142About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Program Activity STATE PROGRAMS Department of Health Prenatal care clinics, standards of obstetric care, newborn screening, services for children with disabilities, special chronicdisease programs, supports for immunization, lead screening and lead poisoning prevention, developmental screening, genetic counseling, family planning, AIDS programs, automobilerestraints, education of the public, professional awareness Departments of Mental Retardation, Developmental Disabilities, and/or Mental Health Early childhood services, family support, counseling Department of Social Services Family support, child protection, respite, foster care, adoption Departments of Welfare, Public Assistance Family support, care coordination, Medicaid Department of Education Family life curricula, school health services, and early intervention programs Office for Children Standards, certification, advocacy Office for Prevention Prevention planning, monitoring, collaborative efforts COMMUNITY PROGRAMSCity health departments Immunization, prenatal care, AIDS work, lead programs Other city agencies Recreation, youth programs, transportation Health care centers Screening, counseling, supports Neighborhoods Education, lead poisoning prevention PRIVATE PROGRAMS Voluntary and consumer organizations Education of public, counseling services,family planning, parent-to-parent services, screening, case-finding, advocacy, pressure on state agencies, and research (March of Dimes, Associations for Retarded Citizens,National Tay-Sachs Allied Diseases Association, National Mucopolysaccharidosis Society, Epilepsy Foundation of America, and United Cerebral Palsy Association)PREVENTION OF DEVELOPMENTAL DISABILITIES 143About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Program Activity Professional organizations Member education, advocacy, studies, standard development, data collection (American Association on Mental Retardation, American Association of University Affiliated Programs, American Academy of Pediatrics, Association of Maternal and Child Health Programs) University centers Genetic counseling and services, other services, technical assistance, education ofpublic, advocacy, and research (teaching hospitals, pediatric departments, and University Affiliated Programs) Private philanthropy Special projects, all types COORDINATION OF SERVICESInteragency coordinating councils These coordinating groups are required in all states that accept planning money under Part H of the Amendments to the Education for Handicapped Children's Act (P. L. 99-457). Under direction of the specified lead agency (usually Education or Health) all the elements of state government participating in the early education effort for children at risk of or withdisability must meet regularly to share in the design of intended services State advisory committees The states participating in the awards from the Disability Prevention Program of the Centers for Disease Control are required to establishadvisory committees with multiagency and consumer membership that monitor the progress of local efforts. PREVENTION OF DEVELOPMENTAL DISABILITIES 144About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Program Activity Citizen organizations Many states that have created state prevention plans derive their original proposals under the stimulation and leadership of a special task force, study group, or governor's panel,with prominent representation by members of the Developmental Disabilities Council or Association for Retarded Citizens. Such committees usually remain in effect even after the state's Office for Prevention is operational and serve a valuable watchdog function in avoluntary setting and services for children with special health care needs. The programs of the Centers for Disease Control include injury control, lead poisoningprevention, childhood immunization, school health, and AIDS prevention. Thenew CDC Disabilities Prevention Program supports the planning, coordination,and evaluation of prevention services. The Office of Human Development Services supports Head Start programs, state Developmental Disabilities Councils, and University Affiliated Programs for persons with developmental disabilities. The Health Care Financing Administration administers the federal contribution to Medicaidprograms, which provide health care reimbursements for persons meeting statefinancial eligibility criteria. Reimbursement for services in the Early Periodic Screening, Diagnosis, and Treatment Program is also managed by this agency. Access to medical care and preventive services is an essential component of the prevention agenda. Persons who are socioeconomically disadvantaged need access to programs providing family planning information and comprehensive prenatal care. In addition, the private sector needs to be moreactive in programs to prevent developmental disabilities, as in the model to provide a "medical home" to children with disabilities that was developed by the Tennessee chapter of the American Academy of Pediatrics. PREVENTION OF DEVELOPMENTAL DISABILITIES 145About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Professional Education The rapid development of new technology makes continuing education of health professionals a challenge. University-based research groups supported by NIH, CDC, NIDRR, and MCH provide training settings for developmentaldisabilities researchers. Despite these programs, there is great need foradditional epidemiologists with expertise in developmental disabilities. Moreleadership is needed in schools of public health to encourage program participants to enter this field. Development of coherent career tracts in universities and state health agencies is needed to keep capable researchers inthe field. Special professional educational programs are needed for practitioners and researchers in the area of developmental disabilities. PREVENTION OF DEVELOPMENTAL DISABILITIES 146About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
5 Prevention of Injury-Related Disability In recent years, injury has begun to receive long overdue recognition as a major public health problem. Attention has focused primarily on the toll of lives lost and on the resultant economic costs. INJURY IN AMERICA: MAGNITUDE OF THE PROBLEM Each year more than 142,000 people in the United States are killed by injuries, the nation's fourth leading cause of death. Injury is the number one killer among people younger than age 45, who incur four-fifths of all injuries. In 1985, indirect costs of forgone productivity due to premature deaths causedby injury were estimated to total $47. 9 billion (Rice et al., 1989). The toll of injury-caused deaths would be much higher, however, if not for advances in the medical and surgical management of trauma and theregionalization of transport and treatment systems. These and other developments have substantially reduced the injury mortality rate during the last several decades. Between 1975 and 1988, the age-adjusted death rate due tounintentional injury decreased from 45. 4 to 35. 8 per 100,000 people (National Safety Council, 1989). This impressive progress in averting death among injury victims does not translate into absolute success. Large and increasing numbers of survivors of once-fatal injuries sustain lifelong impairments and functional limitations that can greatly diminish their ability to carry out the major roles in which they hadpreviously engaged. Consequently, gains in lives saved by advances in the careof injury victims have contributed to the prevalence of disabling conditions inthe United States. Each year an estimated 2. 3 million Americans are hospitalized as the PREVENTION OF INJURY-RELATED DISABILITY 147About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
result of injuries; an additional 54 million sustain injuries requiring outpatient medical care or resulting in one or more days of restricted activity withoutmedical attention (Rice et al., 1989). These figures translate into 16 injury-caused hospitalizations for every death due to injury in the United States. Moreover, for every injury death an additional 381 people sustain less severeinjuries that do not require hospitalization. FIGURE 5-1 Cost of injury by class of injury in the United States, 1985. Source: Rice et al., 1989. A one-year accounting of the economic costs associated with the estimated 57 million people who sustain nonfatal injuries in the United States providessome perspective on the enormity of the problem. Rice and colleagues (1989)estimate that about $108 million, or two-thirds of the total cost of all injuriesincurred in 1985, could be attributed to nonfatal injuries ( Figure 5-1 ). Nearly 60 percent of these costs result from reduced or forgone productivity —the market value of lost work and housekeeping days due to permanent or temporarydisability. Another way to assess this cost is to tabulate lost time from work orother productive activity, a measure known as life years lost. For every 100injuries in a given year, the contributions of 9 life years are lost in the sameyear. The bulk of this loss is attributable to the high incidence of injury andinjury-caused disabling conditions among people between the ages of 15 and44, which encompasses the most productive period of the human life span. Injuries sustained by people in this age group in 1985 resulted in 2. 7 million lifeyears lost, or $44 billion in lost productivity. PREVENTION OF INJURY-RELATED DISABILITY 148About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
In addition to high morbidity costs, nonfatal injuries result in significant direct costs spent for personal health care and rehabilitation. In 1985, $43. 3billion, or $764 per injured person, was spent for hospital and nursing homecare, physicians' services, inpatient and outpatient rehabilitation services, andother health care expenditures related to the injury. Although economic costs do not reflect the pain and suffering associated with injury or the burden placed on family and friends, they do provide aquantifiable measure of the public health significance of injuries and can beuseful in guiding choices among competing programs of primary, secondary,and tertiary prevention. There is little question that nonfatal injuries represent amajor economic burden to society. Ranked by cause, cumulative losses are greatest for injuries incurred in falls and motor vehicle crashes, totaling $35. 6 billion and $30. 2 billion,respectively ( Figure 5-2 ). Poisonings, burns, and injuries associated with the intentional and unintentional use of firearms are also costly to society, totaling$4. 1 billion, $2. 4 billion, and $2. 2 billion, respectively. Nevertheless, thesethree categories account for a small percentage of the total economic costs ofnonfatal injury relative to falls and motor vehicle injuries. Other common causes of injuries include stabbings and other assaults, injuries involving machinery, and sports-related injuries. The ranking of costs according to causes of nonfatal injuries does not mirror the ranking of mortality costs associated with specific causes of injury( Figure 5-3 ). The two leading contributors to mortality costs are FIGURE 5-2 Lifetime costs of non-fatal injury, United States, 1985. PREVENTION OF INJURY-RELATED DISABILITY 149About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
motor vehicle crashes ($18. 4 billion) and incidents involving firearms ($12. 2 billion). In contrast, falls, which rarely are fatal and account for less than 1percent of the mortality costs of injury, are the major source of lifetime costsdue to nonfatal injuries. Motor vehicle crashes are also a major source of costsdue to nonfatal injuries, whereas firearm-related injuries account for about 2percent of the total. FIGURE 5-3 Lifetime costs of injury by cause — deaths vs. nonfatal injury, United States, 1985. The role of firearms in contributing to the population of people with disabling conditions needs to be carefully evaluated. Improved datacollection, discussed elsewhere in this report, is important to this evaluation and the development of effective interventions. CENTRAL NERVOUS SYSTEM INJURIES The remainder of this chapter concentrates on spinal cord injury (SCI) and traumatic brain injury (TBI). Per-person economic costs associated with thesetraumatic injuries to the central nervous system are among the highest costs forinjury-caused pathologies and impairments. Both types of injury often result insignificant physical, neurophysical, and psychosocial deficits that cause long-term disabling conditions, which necessitate extensive PREVENTION OF INJURY-RELATED DISABILITY 150About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
treatment and rehabilitation of affected individuals. Although this chapter focuses on SCI and TBI, much of the discussion, such as that pertaining to themanagement of care, the development and evaluation of preventiveinterventions, the need for a stronger emphasis on behavioral and psychosocialdeterminants of disability, and the importance of tertiary prevention, isapplicable to the broader fields of injury control and disability prevention. In addition, focusing on SCI and TBI is not meant to imply that disabling conditions resulting from injuries to other body systems merit less attention. Orthopedic injuries, for example, including serious injuries to the upper andlower extremities, result in significant impairment and disabling conditions. Formany people with these injuries, recovery can be long and expensive, and evenoptimal treatment may not prevent permanent impairment involving chronicpain, loss of motion or contracture of joints, and deformity or loss of limb. Many of the strategies recommended in this chapter for reducing disabilityassociated with TBI and SCI are relevant to the prevention of disabilityresulting from orthopedic injuries as well. Traumatic Brain Injury: Incidence and Outcomes Studies published within the past 15 years have reported incidence rates for traumatic brain injury in the United States ranging from a low of 180 per100,000 people in San Diego County, California, to a high of 367 per 100,000in the Chicago area (Annegers et al., 1980; Frankowski et al., 1985; Whitman etal., 1984). Differences in incidence are attributable to differences in case definition and case ascertainment methodologies, as well as differences in the age, sex, and, in particular, racial composition of study populations. The onlynational data available are from the National Head and Spinal Cord Injury Survey, which estimated a rate of 200 hospitalizations per year per 100,000people (Kalsbeek et al., 1980). Applying this annual rate to the projected 1990U. S. population yields an estimate of 500,000 expected new cases of TBI. Using an average of 10 percent mortality implies that each year approximately450,000 people survive a TBI, the consequences of which range from slight topersistent vegetative state (Frankowski et al., 1985). Annual direct and indirectcosts associated with traumatic head injury have been estimated at $12. 5 billion(1982 dollars) (Grabow et al., 1984). The acute severity of TBI has traditionally been measured using the Glasgow Coma Scale (GCS), a 13-point scale ranging from 3 to 15. GCS scoresare based on three neurological responses: eye opening, verbal responses, andmotor responses. In general, scores below 8 imply severe head injury; scores between 9 and 12 indicate moderately severe injury; and scores of 13 to 15 indicate mild or minor head injury. Although several studies have demonstrateda high correlation between GCS and PREVENTION OF INJURY-RELATED DISABILITY 151About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
chances of survival, the ability of the GCS to predict long-term quality of life is less clear (Uzzell et al., 1987) and requires further evaluation (Eisenberg, 1985). The majority of individuals hospitalized for TBI are diagnosed as having a mild, uncomplicated closed head injury. Very little is known about theconsequences of these minor head injuries, although increasing evidencesuggests that they often result in persistent headaches and other physicalsymptoms, as well as significant psychosocial and behavioral problems,including difficulty in performing at one's job (Casey et al., 1986; Dikmen etal., 1986; Edna and Cappelen, 1987; Rimel et al., 1981; Wrightson and Gronwall, 1984). The most comprehensive study of mild head injury published to date indicates that of 424 individuals examined 3 months after injury, 78percent complained of persistent headaches, 50 percent had difficulties withmemory, and 34 percent of those employed prior to the injury had not yetreturned to work (Rimel et al., 1981). Given the high incidence of minor headinjuries, their social and economic impacts are considerable. Considerably more is known about the consequences of moderate and severe TBI. Each year approximately 70,000 to 90,000 individuals sustainmoderate to severe TBIs that may result in lifelong potentially disablingconditions. The estimated 2,000 who sustain the most severe disablingconditions survive in a persistent vegetative state, a term referring to their lackof response to external stimuli (Rice et al., 1989). Several studies have documented the sequelae of severe TBI, leading to the characterization of TBI as the ''silent epidemic" because sequelae are primarily neurobehavioral. Although limitations in physical function can be significant following severe TBI, cognitive and psychosocial consequences are more common andcontribute significantly to lifelong disabling conditions and poor quality of life(Bachy-Rita, 1989). Common cognitive sequelae include deficits in attention,memory, general intellectual performance, and linguistic and perceptualfunction. A vast array of emotional disturbances and personality changes havealso been documented, ranging from depression and withdrawal to disinhibitionand euphoria. Behavioral disturbances have become increasingly recognized asa major limiting factor in recovery and return to work following TBI (Levin etal., 1982). Estimates of the proportion of people who return to work following moderate and severe closed head injury vary widely due to differences in injurydefinition, preinjury characteristics of the patient population, and lengths offollow-up. A recent study has shown that only 12 percent of patients withsevere head injuries had returned to work within 6 months; 29 percent hadreturned within a year (Mac Kenzie et al., 1987). Other studies have demonstrated even lower rates for the most severely injured (Jacobs, 1988; Oddy et al., 1985; Weddell et al., 1980). Rates of return to work are somewhathigher for individuals sustaining moderately severe injuries, ranging from 30percent PREVENTION OF INJURY-RELATED DISABILITY 152About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
to 50 percent at 3 to 6 months postinjury, and 50 percent to 60 percent at one year (Oddy and Humphrey, 1980; Rimel et al., 1982). Profiles of individuals who are at highest risk of sustaining TBI are consistent in the research literature (reviewed by Annegers et al., 1980;Frankowski et al., 1985; and Whitman et al., 1984). Adults aged 15 to 24 yearsare at highest risk of sustaining a traumatic brain injury, but the elderly, aged 65and over, and very young children are also at high risk. Compared with females,males are twice as likely to sustain TBI; thus, more than 70 percent of all TBIsoccur among males. Demographic studies indicate that the incidence of TBI is highest for nonwhite, urban populations (ranging from 250 to 400 per 100,000). White populations living in rural and suburban areas, on the other hand, havethe lowest rates (200 per 100,000). Motor vehicle crashes constitute the leading cause of TBI, accounting for one-third to one-half of all new cases. The second leading cause of TBI is falls,accounting for an additional 20 percent to 30 percent of total incidence. Intentional injuries also represent a major cause, although the contribution ofassaults to the overall incidence of head injuries varies among populationsaccording to socioeconomic composition. Studies of inner city Chicago and Bronx County, New York, for instance, indicate that motor vehicle crashes and violence contribute equally to the incidence of head injury (Cooper et al., 1983;Whitman et al., 1984). Given the force involved in motor vehicle crashes, resulting TBIs generally lead to a higher percentage of diffuse brain damage. Falls and blowsto the head, on the other hand, are associated with a higher frequency ofhematomas and focal paralysis. Spinal Cord Injury: Incidence and Outcomes The incidence of SCI is considerably lower than TBI; however, SCI substantially affects both the individual and society. Each year an estimated10,000 to 20,000 people in the United States sustain an SCI (2. 8 to 5 cases per100,000 people). These incidence figures translate into a prevalence ofapproximately 200,000 people in any given year (Kraus, 1985). As with TBI, however, estimates of SCI incidence and prevalence vary considerably across studies because of differences in methods of case ascertainment and incharacteristics of study populations. On average, lifetime costs for medicaltreatment and rehabilitation range from an estimated $210,379 to $751,854(1989 dollars) per individual, depending on the extent of the injury. The averagepresent value of forgone earnings due to premature death and disability rangesfrom $151,250 to $308,000 per person. Total lifetime costs of all new cases of SCI in 1989 will amount to an estimated $6 billion (1989 dollars) (De Vivo,1989). In contrast to TBI, the major impairments resulting from spinal cord PREVENTION OF INJURY-RELATED DISABILITY 153About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
injury are muscle paralysis and loss of sensation. The distinction is made between paralysis involving both the arms and the legs (quadriplegia) and thatof the legs only (paraplegia). Quadriplegia results from injury to one of theeight cervical segments or neck region of the spinal cord. Paraplegia resultswhen the injury is confined to the thoracic, lumbar, or sacral regions of thecord. In general, the higher the injury is to the cord, the more severe the impairment will be. An estimated one-half of all SCIs result in quadriplegia (Stover and Fine, 1986). More than 95 percent of paraplegic individuals achieveindependence in specific self-care activities and mobility in a wheelchair(Young et al., 1982). Quadriplegic individuals often require frequent physicalassistance in performing personal care tasks such as feeding, dressing, andbathing but may still be independent in the performance of communicative andcognitive activities such as operating a computer. SCIs are also characterized according to the extent of neurologic injury. Complete injuries, or plegia, result in complete loss of sensation or motorcontrol. In contrast, people with incomplete lesions, or paresis, may retain somesensation and motor power, with the degree of impairment depending on theextent of the lesion. Overall, approximately one-half of all SCIs are complete lesions (Stover and Fine, 1986). Studies of patients treated at Regional SCI Centers have reported 5-year employment rates ranging from about 14 percent for quadriplegics withcomplete lesions to 33 percent for paraplegics with incomplete lesions (Stoverand Fine, 1986). Again, estimates are influenced by the length of follow-up andthe preinjury characteristics of the patient population. A recent study (Whiteneck et al., 1989) reported that 63 percent of a select group of high-level quadriplegic individuals on respirators had survived 9 years and were leadingfulfilling lives. Older adolescents and young adults are at highest risk of SCI. Compared with females, males are at three to four times the risk of sustaining SCI. Verylittle is known about the correlation between SCI injury and race or ethnicity. The few studies that have examined this relationship report conflicting results(Kraus, 1985). Motor vehicle crashes of all types constitute the major cause of SCI in the United States, accounting for between 30 percent and 60 percent of all SCIs. Falls constitute the second leading cause, accounting for an additional 20percent to 30 percent of all cases. Acts of violence (primarily involvingfirearms) and sports or recreational activity also contribute significantly to theincidence of SCI, each accounting for an estimated 5 percent to 20 percent of all SCIs. Diving is the major cause of sports-related SCI, being implicated in two-thirds of all sports-related SCI reported by the Model Spinal Cord Injury Systems Program. Football injuries also contribute greatly to SCI in the United States (Stover and Fine, 1986). The extent of injury is related to cause. Nearly one-third of all falls and PREVENTION OF INJURY-RELATED DISABILITY 154About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
motor vehicle-related spinal cord injuries result in incomplete quadriplegia; an additional 15 percent to 20 percent result in complete quadriplegia. SCIs due toacts of violence, on the other hand, more often result in neurologically completeparaplegia. Sports-related SCIs appear to be the most incapacitating; more than90 percent result in quadriplegia, one-half of which are complete (Stover and Fine, 1986). Temporal Changes in Patterns of Injury and Outcome Medical and surgical advances in the acute management of trauma, combined with regionalization of transport and treatment systems, havecontributed to a decrease in the injury fatality rate and accompanying changesin patterns of injury severity. For example, during the past 50 years, patterns ofsurvival following SCI have changed dramatically. In the 1950s only those withlow-level paraplegia were generally expected to survive. Today, even people who sustain high-level quadriplegia are surviving, and if properly cared for in a specialized, comprehensive program, can lead fulfilling lives (Whiteneck et al.,1989). Further, within the past 10 years, there have been discernible shifts in theproportion of patients with neurologically incomplete injuries. The National SCI Database has documented that while the proportion of all SCI patients whoare quadriplegics remained fixed at about 50 percent between 1973 and 1983,the proportion with neurologically incomplete lesions increased from 38 percentto 54 percent. This increase is attributable, in large part, to improved emergencymedical services, including better management of the patient at the scene of theinjury and during transport to the hospital. Only two studies have examined temporal trends in the incidence and outcome of head injury. One, an examination of the incidence of head injury in Olmsted County, Minnesota, between 1935 and 1975, found an overall increasein incidence rates but a constant mortality rate (Annegers et al., 1980). Theincrease was largest for less severe injuries, leading the authors to speculate that the trend resulted from an increased propensity over the years to treat or hospitalize people with minor head injuries. More recently, a study of peoplehospitalized for head injuries in Maryland reported an 18 percent increase inhospitalizations between 1979 and 1986. The greatest increase (nearly 200percent), however, was among the most severely injured (Mac Kenzie et al.,1990). This increase was accompanied by a small decline in the hospital casefatality rate and an increase in the proportion discharged to extended care orrehabilitation facilities. Among those sustaining severe TBI, there was adecrease of 8 percentage points in the proportion discharged to home (from 31percent to 23 percent) and a 5 percentage-point decrease in fatalities (53 percentto 48 percent). These changes were accompanied by a 15 percentage-point jump(9 percent to 24 percent), or a nearly threefold increase, in the proportion of patients discharged to extended care facilities. PREVENTION OF INJURY-RELATED DISABILITY 155About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Caution must be exercised in interpretation, but these trends are evidence that improvement in emergency medical services and acute management ofhead injuries during the past 10 years has substantially increased the proportionof individuals who survive with severe head injury, placing increased demandson families, the health care system, and society at large. SURVEILLANCE: COUNTING THE SURVIVORS AND ASSESSING THEIR NEEDS The preceding review points to many inadequacies in our knowledge of the incidence and outcomes of both TBI and SCI. Better data are needed to identifyimportant shifts in trends and patterns of injury and to build a foundation forbetter planning and evaluation of injury control efforts. The followingdiscussion describes ongoing efforts to address these needs and recommendsareas for further research and development. The Centers for Disease Control (CDC) has defined surveillance as the "ongoing systematic collection, analysis, and interpretation of health dataneeded to plan, implement, and evaluate public health programs. " The timelycollection and reporting of these data are important features of an effectivesurveillance system (Centers for Disease Control, 1988a). Although originallydeveloped to monitor and control epidemics of infectious diseases such assmallpox and cholera, surveillance systems are now applied more broadly tostudy patterns of incidence and outcomes of noninfectious diseases. As forinfectious diseases, these efforts are intended to aid the design of effective strategies for primary and secondary prevention of selected conditions in high-risk groups. Graitcer (1987) has outlined the specific attributes of injurysurveillance systems and discusses the advantages and limitations of alternativeapproaches. Population-based information on injuries and events related to injuries is available from a variety of sources. Examples of national injury data basesdesigned for the surveillance of injuries of specific etiologies include the National Accident Sampling System, the National Electronic Injury Surveillance Systems, the Survey of Occupational Injuries and Illnesses, and the National Crime Survey. Although criticized for incompleteness of coverage,limited content, and high cost, these surveillance systems have providedimportant and useful epidemiological information on TBI and SCI, including etiologies (National Research Council, 1987). Because these systems only track injuries of specific etiology, however, they do not provide completeenumeration of all head and spinal cord injuries. Surveys by the National Center for Health Statistics are another source of data on nonfatal injuries, although they are not designed specifically for thepurpose of injury surveillance. Two specifically relevant surveys are the National Health Interview Survey (NHIS) and the National Hospital PREVENTION OF INJURY-RELATED DISABILITY 156About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Discharge Survey (NHDS). These instruments have the potential to provide uniform data on all neurological injuries of a general severity classregardless of cause or etiology. The NHIS is a probability sample of households in the civilian noninstitutionalized population of the United States. The core survey providesdata on the incidence of injury and acute conditions, duration and types oflimitation of activity, persons injured, hospitalizations, physician visits, and theprevalence of selected chronic conditions. Although the NHIS is one of the fewsources of population-based data on the incidence and outcome of minor or mild head injuries that do not result in hospitalization, it contains very little data on circumstances or cause of injury. Injuries reported in the NHIS are classified into four broad categories: (1) injuries involving moving motor vehicles, (2) injuries occurring at home, (3)injuries occurring at work, and (4) other. This classification is clearlyinadequate for identifying the major external cause of disabling injuriesincluding falls, firearms, and injuries involving machinery. Also, there isinadequate information collected for classifying injuries as to their intent. Finally no attempt is made in the interview to ascertain the circumstances of the injury, for example, involvement of alcohol, use of protective devices such as seat belts, car seats, airbags, and special clothing and eyewear. Without thisimportant information, it is difficult to appropriately identify and targetinterventions for reducing the occurrence of injuries. The NHIS is also a potentially useful source of information on the use of and unmet need for rehabilitation services. Although the current survey asksquestions pertaining to the frequency of physician visits and hospitalizations, itdoes not collect information about the use of specific inpatient and outpatientrehabilitation services. The core NHIS survey should be expanded to include questions pertainingto the circumstances and cause of injury to help improve ourknowledge of injury etiology. In addition, a comprehensive supplement to the NHIS on incidence, medical care, rehabilitation, and disability related toinjury is needed and should be considered as one of the survey's annualspecial topics. The NHDS is an important source of national estimates of the incidence of neurological injuries severe enough to require hospitalization. It consists ofhospital discharge abstracts uniformly collected for a probability sample ofapproximately 200,000 patients treated in nearly 600 short-stay, nonfederalhospitals. Data conform to the Uniform Hospital Discharge Data Set. The recentdevelopment of a computerized conversion table that maps ICD-9CM codeddischarge diagnoses into widely used scores denoting the severity of injuries(i. e., the Abbreviated Injury Scale) has enhanced the usefulness of PREVENTION OF INJURY-RELATED DISABILITY 157About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
this data base for studying patterns of injury specific to severity. A major limitation of these data, however, is the lack of uniform coding of the externalcause of injury. Although a classification of external causes exists within thestructure of the International Classification of Diseases (i. e., ICD E-codes),hospitals vary in their use of these codes. Underreporting of E-codes in hospitaldischarge abstracts has been recognized as a major obstacle in the use of this valuable source of data for monitoring the causes and trends of injuries (National Research Council, 1985; Sniezek et al., 1989; U. S. National Committee for Injury Prevention and Control, 1989; Rice et al., 1989). Although both the NHIS and the NHDS are potentially valuable tools for monitoring the epidemiology of TBI and SCI at the national level, their utilityfor surveillance is limited by their mode of collection. Data are collected andtabulated on an annual basis and published as much as a year later. Such adesign is inconsistent with some surveillance needs. With the increasingavailability of statewide hospital discharge abstract data bases, there are new opportunities for developing timely and cost-efficient surveillance systems to monitor the incidence of TBI and SCI. Currently, 28 states maintain data basesthat contain, at a minimum, the items incorporated in the Uniform Hospital Discharge Data Set. An important advantage of these statewide data basis is thatthey include all hospital discharges and provide data specific to the state and itscommunities. In addition, many states publish timely data. Similar to the NHDS, however, information on cause of the injury is not uniformly collectedfor all discharges. A requirement for E-code data elements in statewide datacollection systems would help to solve this problem, and mandatory E-codinglegislation has been introduced in several states. Implementing the use of E-codes will require the development of guidelines for E-coding and theinstruction of health care providers on the importance of recording data on the cause of injury (Sniezek et al., 1989). Modifying current statewide hospital discharge abstract data to include E-codes would help provide timelyinformation on the incidence of TBI and SCI. Nationally collected E-code data for describing the external cause of injury are needed to enhance injury surveillance activities and improve the accuracy of data on the causes and trends of injury. This will entail thecreation of a separate data field for E-codes in all hospital discharge abstract data systems. With respect to SCI and TBI, mandatory reporting is needed to improve incidence measures, to appropriately allocate resources, and to plan, implement, and evaluate the most effective interventions. Another strategy for monitoring the incidence of TBI and SCI is to enact laws that require reporting injuries to the state health agency. Although PREVENTION OF INJURY-RELATED DISABILITY 158About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
mandatory reporting has been used successfully for monitoring the incidence of infectious diseases, it has only recently been recognized as an effective tool forsurveillance of injuries. Seventeen states, including 12 where reporting ismandated by law, now have SCI registries. In 1987 the Council of State and Territorial Epidemiologists recommended mandatory reporting of acute,traumatic SCI to state health departments and to the CDC. The CDC, together with the Council of State and Territorial Epidemiologists, the American Spinal Injury Association, and other groups, is currently working to implement thisresolution. Similar efforts to identify head injury as a reportable condition are also being pursued. At least nine states have registries of persons with head injuries. However, surveillance of TBI is more difficult than surveillance of SCI, andmay not be practical. The incidence of head injury is also much greater than thatof spinal cord injury, making the development and maintenance of asurveillance system more resource intensive. In addition, TBI is more difficult to define, and standard case definitions are lacking. More work is needed to assess the costs and benefits of mandatory reporting of TBI. Evaluation ofexisting programs would be most helpful in this regard. Resources should be allocated to implement and evaluate mandatory reporting of SCI to state health agencies. Mandatory reporting of SCI should be designed as part of a broader national surveillance program that wouldfacilitate the development, implementation, and evaluation of effective interventions and countermeasures. Studies should be conducted to determine the feasibility and utility of mandatory reporting of TBI. Standard case definitions of TBI are needed and should be developed to facilitate this activity. PRIMARY PREVENTION: THE STRATEGY OF CHOICE An agenda for the prevention of disability associated with traumatic brain and spinal cord injury must place a priority on preventing the injury fromoccurring in the first place. Numerous interventions have been identified in theliterature and have been shown to be effective in reducing the incidence andseverity of traumatic injuries. Many of these interventions have not beenimplemented, however, because of a variety of social, economic, and politicalbarriers. Still other interventions are promising but require further testing for efficacy. As discussed, the causes of TBI and SCI are similar. Motor vehicle crashes are the leading cause of all nonfatal TBI and SCI, followed by falls, assaults,and sports or recreational injuries. The abuse of alcohol and drugs plays a majorrole in the incidence of all traumatic injuries, and TBI and SCI are noexceptions. For example, an estimated 50 percent of all motor PREVENTION OF INJURY-RELATED DISABILITY 159About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
vehicle deaths and homicides and one-quarter of all fatal falls have been attributed to the abuse of alcohol (U. S. National Committee for Injury Prevention and Control, 1989). The literature is replete with examples of interventions that are known to reduce the incidence and severity of injury. The U. S. National Committee for Injury Prevention and Control (1989) recently reviewed the state of the art ininjury control and concluded that, "while questions remain, we already knowenough to act. Indeed, if the interventions recommended [in this report] wereput in general practice, the result would be a dramatic saving in lives, health, and resources. " A recent review of the literature on the evaluation of injury prevention programs estimated that, for those interventions for which adequate data areavailable, the potential cost savings, after the cost of the injury controlprograms, is in the billions of dollars (Rice et al., 1989). For example, apromotional campaign developed in Australia to increase use of bicycle helmets has led to a documented 20 percent reduction in head injuries among bicyclists. This translates in Australia into 178 fewer TBI fatalities each year, 2,465 fewerhead injuries requiring hospitalization, and 16,602 fewer nonhospitalized headinjuries. The resultant cost savings is approximately $255 million (1985 U. S. dollars). In the United States, a similar 20 percent reduction in head injuriesamong bicyclists would result in a potential savings of $183 million. Anotherdramatic example is the potential cost savings from implementing motorcyclisthelmet laws in states that do not now have this requirement. After deducting thecost of helmets and assuming that costs associated with law enforcement wouldbe minimal (because compliance with helmet laws is high), the savings due tofewer head injuries resulting from motorcycle crashes are estimated at $97million. Analyses such as these illustrate the potential cost savings of interventions and provide the basis for more rational choices among alternative programs and policies. It is not possible in this report to evaluate the current state of knowledge regarding the effectiveness of alternative strategies for prevention. The reader isreferred to the report of the U. S. National Committee for Injury Prevention and Control (1989) for a comprehensive review. To illustrate the types of strategies available, however, Table 5-1 lists several interventions to reduce the incidence and severity of motor vehicle-related injuries. Interventions are classified as (1)those of proven effectiveness, (2) those that look promising but require moretesting to establish their effectiveness or to assess their feasibility or cost, and(3) those that require further research and development. A number of clear-cut, unassailable conclusions stand out from a review of the literature. First, several studies have underscored the lack of adequatefunding for injury prevention research and practice. As noted in PREVENTION OF INJURY-RELATED DISABILITY 160About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 161About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 162About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Injury in America (National Research Council, 1985) and more recently in Cost of Injury in the United States (Rice et al., 1989), total expenditures for injury research amount to only 11 percent of the National Cancer Institute'sobligations and 17 percent of the National Heart, Lung, and Blood Institute'sobligations. Yet productivity losses associated with injury death alone (36 lifeyears lost per death) exceed those associated with cancer (16 years lost), stroke (11 years), or heart disease (12 years). Deaths are only a small fraction of the injury problem, however. For every death an estimated 400 individuals survivean injury. Although considerable progress has been made in identifying injuryas a public health priority, adequate resources for the prevention of injuriesthrough application of existing knowledge and the development of newstrategies are still lacking. A second clear-cut conclusion is that, although numerous interventions have been shown to effectively reduce the incidence and severity of injuries,very few strategies have been broadly implemented. One of the major barriersto implementation has been the lack of evidence demonstrating cost savings(Rice et al., 1989). Despite some estimates of large potential costs savings, implementation of interventions perceived as restricting individual liberties often meets strongresistance. A long-standing controversy in injury control concerns the right ofgovernments to restrict individual liberty in the name of public health. Opponents of bicycle and motorcycle helmet laws have not challenged thisbasic principle, but they argue that the choice not to wear a helmet endangersonly the individual and does not jeopardize the public. Yet the costs accrued as a consequence of injuries to those who do not wear helmets are substantial, and a significant fraction of these costs is borne by public agencies and society atlarge (U. S. National Committee for Injury Prevention and Control, 1989). It hasbeen estimated that in 1985 nearly one-third of the costs associated with directhealth care expenditures and 27 percent of transfer payments due to injury werepaid by public sources (Rice et al., 1989). A better understanding of the real andperceived barriers to implementation will help ensure that the public benefitsfrom the results of research and evaluation. Research is needed to evaluate the benefits and costs of injury prevention programs and policies. This would include an assessment of the social, economic, and political barriers to implementation of prevention strategies. Implementation of those strategies that are shown to be cost-beneficial should be given high priority. As summarized in Injury in America (National Research Council, 1985), there are three types of strategies for preventing injuries: (1) persuading personsat risk to change their behavior, (2) requiring people to refrain from riskybehaviors by law or administrative rule, and (3) providing automatic protectionthrough product and environmental design. It is generally accepted PREVENTION OF INJURY-RELATED DISABILITY 163About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
that countermeasures involving the third approach are the most effective because individual behavior is minimally affected. Indeed, groups at highestrisk of injury are often the least likely to alter their behavior in response toeducation or legislative mandate. The potential success of programs and policies aimed at changing risky behavior should not be underestimated. Research is needed on behavioral risk factors related to injury in order to develop and improve effectiveinterventions. Another conclusion that can be drawn from the literature is that comparatively little is known about the risk factors associated with falls;possible countermeasures are rarely researched (National Research Council,1985). Falls rank highest among all nonfatal injuries in both incidence and cost,and constitute a leading cause of disabling conditions in the United States;nevertheless, there is limited information about the risk factors associated withfalls (National Research Council, 1985). More research is needed to identify and improve our understanding of risk factors associated with falls and to develop effective countermeasures that would reduce the number and severity of falls. Necessary elements of such an approach include research, regulatory change, and public education. Finally, the abuse of alcohol and drugs is known to be a major contributor to injuries of all etiology. As will be discussed in later sections, alcohol and drug use can also play an important role in recovery from major trauma in theacute and rehabilitation phases. Research is needed to develop and implement a comprehensive, coordinated approach to reducing the number of injuries resulting from alcohol and drug abuse. A coordinated approach should involve new legislation, regulatory change, and public education. A SYSTEMS APPROACH TO ACUTE CARE AND REHABILITATION Although primary prevention efforts should be given highest priority, there is also a need to ensure that people who survive potentially disabling injuryreceive adequate acute care and rehabilitation. Meeting this need is particularlyimportant because of the growing number of survivors who sustain severeinjuries that result in significant physical and cognitive impairment, and forwhom the prevention of secondary conditions is important. PREVENTION OF INJURY-RELATED DISABILITY 164About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
The Systems Approach Universal access to coordinated systems of care that integrate treatment from the site of the injury through long-term community follow-up isrecognized as essential for mitigating the short-term effects of SCI and TBI andfor controlling the effects of long-term disabling conditions. The four basicelements of such a coordinated approach are summarized below: Emergency Medical Services (and Acute Medical/Surgical Care) : Prompt recognition and treatment of the injured person at the scenewith rapid transport to a designated trauma center specifically designedto treat individuals with neurological injuries. Acute (Medical) Rehabilitation : Begins in the acute phase and continues with an integrated, comprehensive inpatient rehabilitationcare facility specifically designed to care for SCI and TBI survivorsand their families. These services focus on physical and cognitiverestoration of the individual. Psychosocial and Vocational Rehabilitation Services : Services aimed at preparing the individual for independent living and communityreintegration. Although initiated during the inpatient phase of acute(medical) rehabilitation, the majority of these services are deliveredwithin the structure of a transitional living center, day program, oroutpatient services. Lifelong Comprehensive Follow-up : Includes medical, social, psychological, and vocational follow-up on a regularly scheduled basis. The scope and volume of services required at each stage of the system of care will, of course, depend on the nature and severity of the injury. However,some general statements can be made. For example, emergency services andacute care for an individual with SCI should be designed to prevent a secondinjury to the spinal cord, necessitating appropriate stabilization of the spinebefore arriving at the hospital. In the hospital, definitive stabilization of the spine and measures to prevent such complications as deep vein thrombosis, pulmonary emboli, pneumonia, contractures, and decubiti must be performed byexperienced personnel. Medical rehabilitation services should beginimmediately in the acute phase to minimize physical deterioration and preventfurther impairment and functional limitation due to loss of strength and range ofmotion, bladder and bowel incontinence, and inadequate or inappropriatetraining and provision of equipment. Accurate assessment and preparation forreturn to work and independent living during acute care can help alleviate someof the feelings of hopelessness and depression that an injured person oftenexperiences. Psychosocial and vocational rehabilitation should continue theeffort to prevent medical complications and increase functioning. Uponreturning to the community, the individual can benefit from proactive community outreach programs in housing, transportation, recreation, employment, and other activities. PREVENTION OF INJURY-RELATED DISABILITY 165About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Although a coordinated approach to the treatment of TBI patients shares many of the same elements as that for SCI patients, there are differences in thetype and sequence of services required. As summarized previously, residualdeficits associated with TBI are mainly cognitive, behavioral, andpsychological. People with TBI require a constellation of cognitiverehabilitation services not typically needed by an individual recovering from a severe SCI. Also, TBI survivors often have difficulty generalizing what they learn to new situations or problems. Therefore, skills learned in an inpatientacute care or rehabilitation facility may not be transferable to community living. Transitional living centers, day treatment programs, and outpatient servicesbecome important components of a coordinated approach to caring for TBIsurvivors. The complexity of the care continuum in rehabilitation following TBIis discussed by Uomoto and Mc Lean (1989) and is summarized in Figure 5-4. It is important to note, however, that persons sustaining mild or minor head injurymay require initial treatment on an outpatient basis only. Appropriate follow-upof these individuals is important for identifying and treating potential latesequelae, including recurrent headaches, memory problems, and psychosocialand behavioral problems. Significant progress has been made in developing comprehensive systems of care for individuals with SCI. With funding from the National Institute on Disability and Rehabilitation Research, 13 model systems have been establishedduring the past two decades. Through uniform data collection, these systems ofcare have documented ''(1) the system's continually increasing national capturerate; (2) reduced time between injury and admission to the system; (3) reduced length of stays; (4) cost-containment efforts; (5) reduced complication rates; (6) reduced mortality statistics; (7) changes in patterns and extensiveness ofneurological involvement; and (8) change in domestic and vocational patternsfollowing spinal cord injury" (Stover and Fine, 1986). Although these dataprovide evidence in support of the effectiveness of SCI systems of care, it isimportant that comprehensive studies be conducted in which patient outcomesare compared with the outcomes of those who do not receive care within thesystem. Analyses to date lack appropriate controls and are not population based,due in part to a lack of mandatory reporting of SCI and its consequences. Whereas systems of care for SCI patients have existed for almost two decades, TBI systems are still evolving. The number of dedicated rehabilitationprograms for TBI has grown from 40 in 1980 to about 700 in 1988 (Dixon,1989), but federally funded systems of care for TBI patients have only recentlybeen established and have yet to adopt a uniform data set (J. P. Thomas,Medical Sciences Programs, National Institute on Disability and Rehabilitation Research, personal communication, 1989). The following sections review in more detail the four elements of coordinated systems of care for SCI and TBI that were summarized above. Attention PREVENTION OF INJURY-RELATED DISABILITY 166About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
FIGURE 5-4 Care continuum in traumatic brain injury. Follow-upactivity is needed to identify and treat potential sequelae in pe rsons who initially require only outpatient treatment (see the box marked "Home"). Source: Uomoto and Mc Lean, 1989. Reprinted with permission. PREVENTION OF INJURY-RELATED DISABILITY 167About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
is focused on the potential for interrupting the chain of events leading from injury to impairment to functional limitation and disability. Table 5-2 summarizes what is known to be effective in minimizing impairment,maximizing functional capacity, and preventing disability, as well as whatneeds to be known to develop better and more efficient systems of care. Emergency Medical Services The nature of the trauma determines the initial severity of the injury to the central nervous system and to a substantial degree also determines the extent ofthe resulting impairment and functional limitation. Sufficient trauma to thebrain may result in cardiopulmonary death, and direct injury to the uppercervical spinal cord may result in death due to paralysis of the muscles ofrespiration. Should the patient survive the primary injury, however, severalother types of injury can occur and increase the extent and severity of impairment and functional limitation. These other types of injury (described below) are secondary injury to the central nervous system, additional second injury to the spinal cord, associated injury to other organs at the time of the initial event, and medical complications of other body systems. A primary role of emergency medical systems, acute care, and medical rehabilitation is tomitigate these effects and ensure maximum function. However, as the National Research Council (1985) and the U. S. Interagency Head Injury Task Force(1989) have noted, more information is needed on effective interventions. Secondary Injury Primary injury to the brain results in focal hemorrhage or diffuse injury to axons and in hypoxia. The spinal cord, similarly, may sustaininitial contusion, hemorrhage, and hypoxia associated with a disruption of thespine and surrounding structures (Becker and Povlishock, 1985). The cascade ofevents that follow the initial injury often results in further damage ( secondary injury ) to the nervous system. For example, diffuse brain swelling and space-occupying lesions resulting from TBI can contribute to increased intracranial pressure that can further contribute to ischemia and hypoxia —factors that contribute to impaired function and death. The mechanisms andpathophysiology underlying these changes remain unclear and in need of furtherresearch (National Research Council, 1985). Second Injury The initial trauma of SCI can cause responses such as swelling, hemorrhage, and hypoxia. In TBI patients, drug treatment to removefocal hematomas and control swelling and pressure is helpful, but in SCIpatients only modest improvements are achieved. Failure to adequately stabilizethe spine during extrication, transport to the hospital, and in the hospital mayresult in a second injury to the spinal cord, converting an incomplete PREVENTION OF INJURY-RELATED DISABILITY 168About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 169About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 170About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 171About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 172About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
PREVENTION OF INJURY-RELATED DISABILITY 173About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
lesion into a complete lesion, which not only increases impairment but also diminishes the prognosis for recovery (National Research Council, 1985). Associated Injury Persons with central nervous system trauma often have multiple injuries to other organs, and these associated injuries can contribute to further complications and impairment. For example, recent studies indicate thatas many as 82 percent of patients with TBI sustain associated injuries (Bontke,1989). These associated injuries include fractures of long bones, skull, andspine; chest and abdominal injuries; and peripheral nerve damage (Stover and Fine, 1986). The high incidence of associated injuries is related to the majorrole that motor vehicle crashes play in causing central nervous system trauma. Finally, about 10 percent of TBI patients have associated SCI, and 10 percent of SCI patients have associated severe TBI. Compared with those whodamage only one organ of the central nervous system, both groups sustaingreater impairment and subsequent disability. A recent report indicates that upto half of SCI patients may have a mild head injury, but the incidence of long-term impairment in these cases is not known (Davidoff et al., 1988). Areduction in overall impairment and mortality may be achievable by improvingthe skill with which TBI and SCI patients are managed (National Research Council, 1985). Complications (Secondary Conditions) The effect of medical complications on individual function is significant. Patients with SCI and TBIoften have similar complications that contribute to impairment and functionallimitation, including complications to the cardiopulmonary-vascular,neuromusculoskeletal, and genitourinary-gastrointestinal systems; however,considerably more is known about the incidence and potential for intervention PREVENTION OF INJURY-RELATED DISABILITY 174About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
in patients with SCI than in those with TBI (Young et al., 1982; Stover and Fine, 1986). In large part, this lack of information on TBI is attributable to amore mature system of neurological classification and data collection on SCI(Stover and Fine, 1986). For TBI, classification and data collection arerelatively new and present more complicated problems (Bachy-Rita, 1989). Consequently, efforts to quantify the effectiveness of various intervention strategies in TBI lag behind similar efforts in SCI. On closer inspection, certain types of complications that appear to be similar are substantially different in the SCI and TBI patient. For example,heterotopic ossification, a cause of contractures, occurs predominantly in theupper extremities in TBI, whereas it occurs predominantly in the lowerextremities in SCI (Venier and Ditunno, 1971). Spasticity during the acute phase of TBI may frequently require casting to prevent contracture (Weintraub and Opat, 1989), but this is seldom required in SCI. Other complications areseen exclusively in TBI, such as cognitive dysfunction, linguistic and cranialnerve deficits, personality change, hydrocephalus, and seizures. Disseminatedvascular clotting and neuroendocrine disorders are also prominent in TBI(Bontke, 1989; National Research Council, 1985). Deep vein thrombosis is a very common medical complication and occurs in 80 percent to 100 percent of completely paralyzed SCI patients, leading topulmonary embolism, one of the most frequent causes of early death. Recentstudies provide evidence of effective methods of prevention, and these methodsshould be used more widely (Merli et al., 1988; Green et al., 1988). Occurringin 60 percent to 80 percent of high-level quadriplegic patients, pulmonary complications such as atelectasis and pneumonia are another major cause of mortality and morbidity. Improved understanding of the underlyingmechanisms could point the way to more effective interventions (Fishburn etal., 1990). Infection of the urinary tract is another common complication in SCI and TBI patients who use indwelling Foley catheters. However, advances in the useof intermittent catheterization and improved measures of follow-up in personswith SCI have been reported to reduce renal disease as a major cause of death inthe long-term patient (Stover and Fine, 1986). Recurrent urinary tract infection and complications, however, continue to be a source of functional limitation and, at times, are associated with autonomic hypertension and increasedspasticity. Impaired bowel function is common in both groups of patientsbecause of immobility. Contractures associated with muscle weakness and imbalance, spasticity, and heterotopic ossification constitute a type of medical complication that canlead to significant impairment and functional limitation. Limited shouldermotion resulting from contractures, for example, may make it impossible for anindividual to put on a shirt or reach overhead; walking is severely compromised if strength recovers but the knees and hips are permanently PREVENTION OF INJURY-RELATED DISABILITY 175About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
fused in flexion, not allowing proper standing and ambulation. A recent study (Yarkony and Sahgal, 1987) reported an 85 percent incidence of contractures incraniocerebral trauma cases transferred to a rehabilitation unit; frequency wasrelated to duration of coma. In SCI and TBI patients, contractures are mosteffectively prevented when bed positioning and therapies to maintain motionare instituted early and are continued throughout all phases of recovery. Pressure sores are perhaps the most commonly cited medical complication associated with SCI. Nutritional deficiency, which may be prevalent early in theconditions of TBI and SCI patients, contributes to tissue breakdown and hasbeen found to correlate with outcome (Ragnarsson, in press). Recurrent pressuresores do occur in a small proportion of patients after discharge, and improvedstrategies for prevention during this phase are needed. However, proper education and training in combination with assistive equipment can be effective in preventing this condition. SCI patients suffer severe pressure sores almosttwice as often before arriving at a model system care facility as after entry intothe facility (Young et al., 1982). Basic and clinical research is needed in conjunction with improved surveillance data to develop and improve effective interventions for the prevention, management, and reduction of injury-related damage to thecentral nervous system. In particular, emphasis should be given to the reduction of medical complications that contribute to short-and long-term disability in persons with SCI and TBI. Acute (Medical) Rehabilitation Beginning a course of rehabilitation necessitates the assessment of a person's physical and mental status. In terms of the committee's disability model, it is important to establish the stage in the progression, the risk factors, and the relevant preventive interventions. Depending on the type of impairment,for example, different interventions can be used during rehabilitation to helpprevent the development of functional limitations. In persons with SCI, reducedmotor power is the major cause of functional limitation. Among persons with TBI, acute weakness of one side occurs in 18 percent of cases (Eisenberg, 1985)and usually improves without contributing to significant limitation. Mostfunctional limitations associated with severe head injury are attributable toneurobehavioral impairments (Levin, 1985; Bleiberg et al., 1989; Diller and Ben-Yishay, 1989). Virtually all studies of rehabilitation in SCI patients are concerned with the capacity for self-care and mobility and how they relate to the severity of the neurological deficit (Ditunno et al., 1987; Welch et al., 1986; Yarkony et al., 1988). Strengthening exercises have been shown to increase motor PREVENTION OF INJURY-RELATED DISABILITY 176About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
power in partially paralyzed muscles and are therefore important in preventing certain SCI impairments from progressing to functional limitations. In addition,recent studies (Ditunno et al., 1987, 1989a, 1989b) have shown sufficientrecovery of motor power in the arms of quadriplegic patients to enablesignificant improvement in function during rehabilitation and at the time of one-year follow-up. Recently reported research (Bracken et al., 1990) has demonstrated that treatment with methylprednisolone within 8 hours of spinal cord injurysignificantly improved the recovery of motor and sensory function. Becausemost people with acute SCI are admitted to a hospital within the critical 8-hourperiod, this intervention has great potential for reducing disabling conditions. The study, however, did not measure functional improvement. Improved cardiovascular conditioning of paraplegic individuals is an important part of rehabilitation and can be achieved through aerobic exercises,especially in young people. Such conditioning enables many to participate inwheelchair sports and to walk in braces with crutches. Functional electrical stimulation (FES) has been promoted as having several potential applications. These include increasing strength and enduranceand preventing osteoporosis in paraplegic and quadriplegic individuals,although these claims have not been evaluated rigorously (Ragnarsson et al.,1988). Another application of FES is in implantable electrodes to enable upper extremity grasping and thus self-feeding by persons with high-level quadriplegia (Peckham et al., 1986). Applications of FES in ambulation(Marsolais and Kobetic, 1988) and prevention of pressure sores (Davidoff et al.,1988) show early promise but require further development and evaluation. Individuals with complete paralysis of leg muscles can learn to get in and out of bed, bathe, dress, use the toilet, and dress without assistance by learningcertain skillful maneuvers and using adaptive equipment. A high level ofindependence can be achieved with the aid of adaptive equipment and trainingin feeding, dressing, bathing, using a wheelchair, and driving a car. Even people with paralysis in all limbs can reduce dependency through the use of technology that permits such individuals to unlock doors, turn on lights, and operate aphone or a computer. The opportunity for enhancing functional capacity andindependence in people with paralysis is great, meriting an expanded researchand development effort on new assistive technologies. Educational programs that help individuals perform self-care activities are an integral part of the rehabilitation process, which begins in the acute phase ofinjury and continues throughout the life course. Modification of procedures,tasks, and schedules according to the needs of the individual facilitates functioning on the job and in other social contexts. Eventually, these modifications should become the exclusive responsibility of the person with thepotentially disabling condition. Another example is learning to PREVENTION OF INJURY-RELATED DISABILITY 177About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
control bladder and bowel dysfunction, which occurs in most individuals with injury to the spinal cord. Control of these functions is an important aspect ofrehabilitation. With skillful training, more than 90 percent of SCI patients arecapable of bladder and bowel continence. Training also includes education onhow to avoid bladder infection and prevent other potentially disabling conditions. People with TBI often have more extensive impairment of the nervous system than do people with SCI because TBI can result in focal or diffuselesions in any part of the brain. Paralysis, spasticity and rigidity, ataxia, andother disorders affecting coordination in the hands or legs can lead to functionallimitation. Posttraumatic involvement of the sensory, labyrinth, or cerebellar-mediated systems results in ataxia in 20 percent to 30 percent of peoplesustaining diffuse brain injury (Weintraub and Opat, 1989). In these cases, functional limitation is common because of difficulties in hand performance of fine motor skills and in gross motor skills such as walking. Although the true incidence of cranial nerve involvement is unknown, loss of the sense of smell occurs in 7 percent to 25 percent of all head injury patients(Berrol, 1989). Because any of the cranial nerves may be involved, impairmentscaused by head injury include defective smell, vision, taste, and hearing andthus often limit the amount of information available from the environment;however, the effects of these impairments on function are unclear. As many as 40 percent of all people with TBI experience problems in communication due to partial aphasia. Other linguistic limitations such asnaming, sentence repetition, and word fluency occur in an additional 30 percentor more of cases (Levin and Goldstein, 1989). Because little is known about thenatural course of these limitations, interventions that might improve functionare lacking. Assessment of the neurobehavioral impairments that contribute to the greatest functional limitations in TBI is a considerable research need. Cognitiveimpairments, which may be grouped into problems with attention, conceptformation, executive function, self-regulation of affect, and memory, have beenidentified and occur in the majority of patients with head injury (Diller and Ben-Yishay, 1989). However, information on how these impairments affectfunction, particularly self-care, is very limited. Finally, when motor impairment occurs along with neurobehavioral dysfunction, traditional instruments for evaluating function and the results ofintervention may be of limited value. For example, the reason why someindividuals do not dress themselves may not be because of paralysis but becausethey sit on the bed without initiating any movement (Diller and Ben-Yishay,1989). Although training individuals with cognitive deficits to become more functional has yielded some encouraging results, better tests to measure PREVENTION OF INJURY-RELATED DISABILITY 178About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
executive function, process function, and acceptance and awareness need to be developed (Diller and Ben-Yishay, 1989). In summary, acute (medical) rehabilitation is an important component of the systems approach to acute care and rehabilitation. However, becauseimpairments in strength, tone, coordination, and information transmission maybe superimposed on cognitive and behavioral impairments, better indexes thatintegrate impairment, functional limitation, and disability need to be developedto determine the effectiveness of rehabilitation interventions. These assessmentsmust be applied to the proliferating alternative treatment e environments in TBI care, such as day treatment and cognitive rehabilitation. Basic and clinical rehabilitation research is needed in the prevention, management, and reduction of the motor impairment associated with SCI and the neurobehavioral impairment associated with TBI. In particular, more thorough study is needed of motor recovery in SCI patients and the effectiveness of various interventions such as surgery, drugs, andrehabilitation in reducing impairment and improving function. Future research should focus on potential applications of functional electrical stimulation, development and testing of new assistive technologies, and the causal relationships between TBI and the senses of smell, vision, taste, and hearing, as well as the causal relationship between TBI and aphasia. Better tests to measure higher cortical function (e. g., executive function, process function, and acceptance and awareness) are needed to facilitateevaluation of rehabilitation effectiveness. These indexes should integrate measures of impairment, functional limitation, and disability. An obvious need is for consistent classification and categorization of TBI severity. Such classification can serve as a basis for prognosis and permit reliable assessments of the effectiveness of therapeutic interventions inreducing impairments. Psychosocial and Vocational Rehabilitation and Lifelong Comprehensive Follow-up Psychosocial and vocational interventions during acute and rehabilitation phases are directed at helping the individual and family members cope with thesudden and potentially devastating effects of the affected person's altered self-image and self-esteem. Prior to the patient being discharged into the community, the goal of such interventions is to offer vocational opportunities, with early assessment, and prepare the individual and family members for theadjustment to the affected person's altered but possibly independent lifestyle. PREVENTION OF INJURY-RELATED DISABILITY 179About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
As functional recovery improves during the first year or more after the injury, the focus of rehabilitation shifts from medical intervention and physicalrestoration to psychosocial and vocational adaptation. The ultimate goal ofpsychosocial and vocational rehabilitation is community reintegration. Forchildren and adolescents, this may mean returning to school. For adults,returning to work is an important component of reintegration. It is important to emphasize that services aimed at community reintegration must consider not only attributes and limitations of the injured individual, but also the social,educational, and vocational systems in which the individual will function. It has long been recognized that individuals vary greatly in their ability to adapt to a functional limitation. As discussed in Chapter 3, variability in outcome depends on a host of personal and environmental factors, some ofwhich are mutable. Although a comprehensive review of the necessarycomponents of an integrated, coordinated approach to community reintegrationis beyond the scope of this report, a brief summary of some of the more important elements follows. The reader is referred to Chapters 18-20 of Traumatic Brain Injury (Bach-y-Rita, 1989) for a more complete discussion of the issues. Transitional living centers offer community-based residential programs that provide an opportunity for individuals to relearn and practice, in a protectedbut real-life environment, the skills necessary for living independently andproductively. Although most individuals who sustain SCI return homefollowing inpatient rehabilitation, the individual with severe TBI often requiresthe services of a transitional living center after discharge from an acute rehabilitation center. When the structure of a residential program (e. g., a transitional living center) is no longer needed, individuals may still require additional training andsupport from day programs designed to prepare them further for reintegrationinto society. For individuals who continue to require assistance with activitiesof daily living, in-home services may be required. Vocational services are crucial for ensuring that return-to-work goals are achieved. These services may include counseling and work readinessevaluations, job training, job placement, work-site modification, andpostemployment services intended to ensure satisfactory adjustment toemployment. Independent living centers offer valuable resources throughout the process of recovery from TBI and SCI. These centers are primarily staffed byindividuals with disabling conditions and provide a supportive network forindividuals who want to achieve an independent lifestyle. The importance ofindependent living centers to the welfare of people with disabling conditionscannot be overemphasized. (Independent living centers are described in moredetail in Chapter 7. )PREVENTION OF INJURY-RELATED DISABILITY 180About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Providers and consumers alike express concerns that existing psychosocial and vocational services do not adequately meet the needs of clients (National Council on the Handicapped, 1986). This is particularly true for servicesrequired by individuals with TBI. Special education, for example, often focuseson the needs of children with developmental disabilities. The child coping withthe effects of a head injury is thought to have needs different from those of the child with a developmental disability. Yet school systems often do not recognize these special needs and do not have the necessary resources toaddress them. Similarly, vocational rehabilitation specialists often are nottrained to specifically respond to the needs of the head-injured adult who mayhave no physical limitations but, because of inappropriate behavior or memoryproblems, has difficulty keeping a job. Existing and alternative strategies for psychosocial and vocational rehabilitation of individuals with SCI and TBI need to be developed and assessed for their effectiveness. This will require longitudinal studies tomeasure both outcome and program costs. Research on outcomes of psychosocial and vocational rehabilitation should include measures of quality of life and not limit the definition of successful outcome solely to return to work, school, or household maintenance. Community-based programs, independent living centers, projects with industry, and alternative programs should be considered in research and evaluation projects. Despite some questions about the efficacy of the increasing number of alternative strategies for rehabilitating people with SCI or TBI, it is clear that a wide range of community services are needed. It is also clear that many peoplewho need these services do not receive them, and that quality psychosocial andvocational rehabilitation services aimed at reintegrating persons with disablingconditions into the community and back to work should be available to thosewho need them. The number of day programs is increasing but is stillinsufficient to meet the more rapidly increasing demand for such services(Jacobs, 1988). A major conclusion of the Los Angeles Head Injury Survey wasthat the rehabilitation needs of many persons with traumatic brain injury gounmet because of the geographic and financial inaccessibility of services. Theshortage of services is even more acute in rural areas of the country. Rehabilitation, especially neurobehavioral rehabilitation and psychosocial services, is rarely covered by private health insurance. The extent of coverage under Medicaid varies greatly from state to state, but, generally, Medicaidfunding is restricted to inpatient medical rehabilitation and physical therapy. Financial support for transitional living centers and vocational PREVENTION OF INJURY-RELATED DISABILITY 181About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
rehabilitation is more limited. Strict and often confusing eligibility requirements for vocational rehabilitation programs further limit accessibility to theseservices, especially for those with TBI. Means for removing financial barriers that limit accessibility to rehabilitation services need to be studied. Such studies should evaluate the extent to which current public and private compensation programs createnonproductive disincentives for rehabilitation and resumption of a productive role in society. In addition, the lack of public and private insurance coverage for neurobehavioral rehabilitation and psychosocial and vocational services should be examined. Multidisciplinary research is needed to develop a better understanding of the multiple factors, both medical and nonmedical, that contribute to disability and the overall quality of life following TBI and SCI. Given the problems associated with the availability and accessibility of services, the family often assumes the major responsibility for providing careand support to individuals with SCI or TBI (Jacobs, 1988). This responsibility,often lifelong, may have a major impact on members of the family, as well ason the family unit as a whole (Bach-y-Rita, 1989). Separation and divorce andfinancial difficulties are among the problems commonly reported by families ofpersons who have sustained major trauma. These problems are especially acutefor families of persons with TBI (Brooks, 1984). Additional problems arisewhen the primary caregiver dies. Society must face the challenge of providing appropriate and adequate support to individuals with major physical and neurobehavioral disablingconditions. Addressing this need will require educating employers of the rightsand capabilities of people with disabling conditions associated with TBI and SCI. Expanded education programs are needed to inform the public about the legal rights of people with disabling conditions, including their rights towork and their guarantees of full participation in society, as is consistent with provisions of the Americans with Disabilities Act. Education programs are also needed to instruct employers in the special capabilities and needs of persons with TBI and SCI. In summary, there is a growing consensus that universal access to coordinated systems of care that integrate treatment from the site of injurythrough long-term community follow-up is essential for mitigating the short-term effects of SCI and TBI and for reducing long-term disability. However, theestablishment of national and regional networks of SCI and TBI systems of carethat link state and local systems will need to be tested. For PREVENTION OF INJURY-RELATED DISABILITY 182About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TBI, testing of the entire system, its components, and overall effectiveness is needed; for SCI, more rigorous control is required. Closer working relationshipsbetween industry and vocational rehabilitation programs should also be fostered. Coordinated systems of care that integrate treatment from the site of injury through long-term community follow-up are needed for mitigating the short-term effects of SCI and TBI and for reducing long-term disability. Several studies have underscored the lack of adequate funding for injury prevention research and practice (National Research Council, 1985; Rice et al., 1989). Although considerable progress has been made in accurately describing and establishing injury as a major public health concern, greater resources mustbe directed to the prevention of injuries by applying existing knowledge and bydeveloping new intervention strategies. Available resources for injury prevention research and practice shouldreflect the importance of injury as one of the leading causes of disability. Consonant with the recommendations included in Injury in America (National Research Council, 1985), Cost of Injury in the United States (Rice et al., 1989), and Injury Prevention (U. S. National Committee for Injury Prevention and Control, 1989), a Center for Injury Control isneeded and should be established within the Centers for Disease Control to serve as a focal point for national injury prevention programs and activities. This would be an important component of a national disability prevention program. PREVENTION OF INJURY-RELATED DISABILITY 183About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
6 Prevention of Disability Associated with Chronic Diseases and Aging Disease prevention and health promotion have been a strong focus of interest among policymakers, researchers, and practitioners in recent years. Demographers and epidemiologists have documented convincingly one significant outcome of disease prevention and health promotion: therevolutionary change in average life expectancy during the past two centuries. The first revolution in public health occurred when the basic principles ofsanitation were understood and implemented and when basic nutritional needscould be met reliably in modernizing societies. In the eighteenth and nineteenthcenturies, coping with acute bacterial and virus-related diseases ultimately ledmedical practitioners to better understand the importance of sanitation, adequatenutrition, and, eventually, medical immunization. This first revolution has had at least two consequences: the age structure of modern society shifted as a result of increased average life expectancy, andacute disease was joined by chronic disease as a focus of public health attention. Chronic disease and its related disabling conditions, however, have not been responsive to the traditional public health interventions that were so successfulin the first revolution. The continuing challenge of coping with chronic diseasesets the stage for the second revolution in public health, which focuses onbehavior and lifestyle modification as key components in health promotion anddisease prevention. The Canadian Lalonde report (1974) and the U. S. surgeon general's reports (U. S. Department of Health, Education, and Welfare, 1979; U. S. Department of Health and Human Services, 1980a) were notable public statements of a belief in the modifiability of risk factors with a specific focus on the potential benefits of behavioral and lifestyle modifications. The surgeon general's reports used thelife course approach to set specific health objectives to be achieved by the year1990 among children, adolescents, adults,PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING184About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
and older persons. These reports noted the relevance of genetics, medical care, and toxic factors in the environment; however, behavior and lifestyle changewere clearly the major foci. The reports were notable for their inclusion of olderadults in the health objectives, affirming that although age and disease areassociated, the association is conditional and modifiable. Recent federal initiatives have focused on the older population as a target group for preventive care and health promotion activities. For example, thesurgeon general sponsored a Workshop on Health Promotion and Aging (U. S. Department of Health and Human Services, 1988b), which documents thebenefits of several interventions to lower existing risks among the elderly (seethe discussion later in this chapter). The recent Healthy People 2000: National Health Promotion and Disease Prevention Objectives (U. S. Department of Health and Human Services, 1990) employs the life course approach in setting objectives, including goals to increase average life expectancy to 78 years, toreduce disability caused by chronic conditions to a prevalence of no more than6 percent of all people, and to increase years of healthy life to at least 65 years. In the area of research, the National Institute on Aging is supporting studies tounderstand the aging process; to improve the diagnosis, treatment, andprevention of diseases that affect older people; and to improve their quality oflife (National Institute on Aging, 1989). There are several reasons for adopting a health promotion and disease prevention approach for older adults. Life expectancy is increasing, and it isdesirable to enhance health status during these additional years of life. Inaddition, there is increasing evidence that some harmful habits and behaviorsare amenable to modification or reversal when interventions occur in lateryears. This capacity for modifying physiological or pathological conditions hasbeen referred to as the plasticity of the aging process (National Research Council, 1988). Finally, the high incidence of chronic disease and disabling conditions among the elderly and the burden disease places on individuals andsociety dictate the need for effective methods to ameliorate the deleteriouseffects of illness and disabling conditions that require costly medical careservices. The public perceives aging as a process of steady deterioration, which results in subtle discrimination that is sometimes referred to as ageism. Theperception that age, chronic disease, and disability are equivalent conditionsprevents our society from realizing the potential benefits of a disability-free lifeeven among older persons. This perception has also influenced the socialpolicies and social support networks developed in our society. The public needs to be educated about the potential for modifying the aging processes through individual lifestyle change and through social policies ensuring adequate income, educational opportunities, and social support during a person's life course. PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING185About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
MAGNITUDE OF THE PROBLEM The magnitude of disability associated with chronic conditions and aging can be measured from a variety of perspectives. Three of these perspectives — prevalence of chronic conditions and their risk of disability, prevalence ofmultiple chronic conditions, and limitation in basic life activities —will be discussed here. Because some chronic diseases occur before age 65, andbecause a life course perspective is important for considering chronic disease, aging, and disability, the data presented are not limited to the elderly. Prevalence of Chronic Conditions Although the prevalence of chronic illness increases with age and is a major cause of disabling conditions, many elderly persons are healthy andfunction independently. In 1988, 33. 1 million people in the United States, or13. 7 percent of the noninstitutionalized population, reported some limitation oftheir activities as a result of chronic disease or impairment; 4. 3 percent were limited, but not in their major activity; 5. 4 percent were limited in the amount or kind of their major activity, and 4 percent —''the most severely disabled" —were unable to carry on their major activity ( Table 6-1 ) (National Center for Health Statistics, 1989a). The prevalence of all three levels of activity limitationincreases with age except for those with "severe disabilities," for whom therates rise from less than one-half of 1 percent for those under 18 years to 16. 2percent for the 65-to 69-year-olds. For those 70 years and older, however, theprevalence rate falls to 7. 6 percent. This reduction may be the result of theoldest old population entering institutions when they become severely disabled. The prevalence of most chronic health conditions varies by age group. Table 6-2 presents estimates from the 1988 National Health Interview Survey (NHIS) of the number of chronic conditions and the rate per 1,000 persons forall noninstitutionalized persons and for the population aged 65 and older. Theconditions are ranked according to their prevalence in the total population. Thefive most prevalent chronic conditions for all ages are chronic sinusitis, arthritis, high blood pressure, deformity or orthopedic impairment, and hay fever. For the elderly population, arthritis ranked highest with almost half (49percent) reporting this condition, followed in rank order by high blood pressure(37 percent), hearing impairment (32 percent), heart disease (30 percent), andchronic sinusitis (12 percent) ( Figure 6-1 ). The relative ranking of conditions depends on how the conditions are grouped. For example, if deformities of theback were shown separately, they would rank eighth for all ages and eleventhfor the elderly. When combined with deformities or orthopedic impairments ofthe upper extremities, as shown in Table 6-2, they rank fourth for all ages and seventh for the PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING186About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |