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Disability in America: Toward a National Agenda for Prevention 7 Prevention of Secondary Conditions Traditionally, rehabilitation has been viewed as the major type of health care intervention for people with disabling conditions, with recovery of function as the sole aim of treatment. A consequence of this perspective is that disabling conditions are categorized as static entities (Marge, 1988). One commonly held view is that once recovery reaches a plateau and treatment ceases, the person with a disabling condition is likely to remain permanently at this level of health status and functioning. This long-held view fails to recognize the true nature of disabling conditions: they are long-term, dynamic conditions that can fluctuate in severity during the life course. Moreover, people with disabling conditions often develop additional conditions that are causally related to the primary disabling condition and that may be more debilitating. Much of the literature refers to these conditions as secondary disabilities . In the interest of conceptual clarity, however, the committee has adopted the term secondary conditions because many of the conditions that occur are not disabilities per se but pathologies, impairments, and functional limitations. Thus a secondary condition is a condition that is causally related to a disabling condition (i.e., occurs as a result of the primary disabling condition) and that can be either a pathology, an impairment, a functional limitation, or an additional disability. The existence of a potentially disabling (primary) condition is a strong risk factor for certain secondary conditions; by definition, the secondary condition would not occur in the absence of the primary condition. This causal relationship between primary and secondary conditions lends itself to preventive interventions that are designed to reduce the risk of developing secondary conditions and the concomitant potential for additional deterioration in health status and quality of life.
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Disability in America: Toward a National Agenda for Prevention According to Marge (1988), among the most commonly reported secondary conditions are pressure sores, contractures, urinary tract infections, and depression (Table 7-1), each of which can cause additional impairment, functional limitation, and disability. Specific examples of the relationship between a primary disabling condition and resultant secondary conditions include decubitus ulcers and contractures that develop because of lack of movement in a person with paraplegia, and depression that develops as a result of spinal cord injury. Health promotion and amelioration of the primary disabling condition—the traditional aim of rehabilitation—are the principal strategies for minimizing the risk of a secondary condition. Because the presence of a disabling condition and, consequently, vulnerability to secondary conditions are lifelong, approaches to prevention should focus on the long term and the whole person. Critical elements of interventions include regular monitoring of health status, continuity of care, availability of appropriate assistive technology, training in coping with limitations, and community support including measures that ensure access to transportation, housing, and opportunities for employment. MODEL OF SECONDARY CONDITIONS All primary disabling conditions entail increased vulnerability to secondary conditions that can arise in many ways. A model of the process that leads to a secondary condition is depicted in Figure 7-1. Added to the nexus of interactive risk factors in the previously described model of the disabling process (Figure 3-3) is the existence of a primary disabling condition. Collectively, the presence of risk factors predisposes a person to a progression that begins with a new, or secondary, pathology and that can end with additional disability. Thus opportunities to intervene exist at several stages. The committee has defined the relationship between the primary disabling condition and a secondary condition as a causal one; the secondary condition would not occur without the existence of the primary condition. However, the causal relationship can be either direct or indirect. The common example of a direct etiological relationship is the development of pressure sores in persons who use wheelchairs and are limited in activity as a result of spinal cord injury. An example of an indirect relationship is that of a disabling condition that causes new stresses—uncertainty about the future, changes in living environments and social relationships, and frustrations from being unable to gain access to a building—that in turn can cause hypertension or other stress-related diseases. In addition, disabling conditions can magnify the influence of other existing risk factors. Continuation of smoking, heavy drinking, poor dietary habits, and other deleterious behaviors greatly increases the likelihood that a secondary condition will develop.
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Disability in America: Toward a National Agenda for Prevention TABLE 7-1 Causes of Some Common Secondary Conditions Secondary Condition Causes Decubitus ulcers Inaccessibility to adequate health care, improper seating for those with the disuse syndrome, lack of continuous personal hygiene. Genitourinary tract disorders Inaccessibility to adequate health care, genetic disorders, alcohol and drug abuse, nutritional disorders, lack of personal hygiene, acute and chronic illness. Cardiovascular disorders Alcohol and drug abuse, tobacco use, nutritional disorders, stress, inaccessibility to adequate health care, acute and chronic illness, lack of physical fitness. Stroke Lack of physical fitness, nutritional disorders, tobacco use, stress, alcohol and drug abuse, inaccessibility to adequate health care (hypertension control). Musculoskeletal problems Lack of physical fitness, injuries, stress, genetic disorders, perinatal complications, acute and chronic illness, inaccessibility to adequate health care. Arthritis Speculated lack of physical fitness, nutritional disorders, stress and possibly genetic disorder. Respiratory problems Lack of physical fitness, acute and chronic illness, environmental quality problems, alcohol and drug problems, tobacco use, unsanitary living conditions, genetic disorders. Hearing loss Genetic disorders, acute and chronic illness, injuries, violence, environmental quality problems (noise pollution). Speech and language problems Genetic disorders, acute and chronic illness, injuries, environmental quality problems, neurological deficits (such as strokes), cancer and respiratory problems. Vision problems Genetic disorders, acute and chronic illness, injuries, violence, nutritional disorders, environmental quality problems, inaccessibility to adequate health care. Emotional problems Genetic disorders, stress, alcohol and drug abuse, deleterious child-rearing practices and familial-cultural beliefs; inaccessibility to adequate mental health care. Skin disorders Genetic disorders, acute and chronic illness, injuries (fires and burns), nutritional disorders, unsanitary living conditions, stress. SOURCE: Adapted from Marge, 1988.
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Disability in America: Toward a National Agenda for Prevention FIGURE 7-1 Model of secondary conditions. Note the addition of the ''primary disabling condition" as an additional risk factor. By definition, a "primary condition" is a risk factor for the secondary condition. This model shows that a secondary condition can be anything from a pathology to a disability. It also allows for interaction between the primary and the secondary conditions.
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Disability in America: Toward a National Agenda for Prevention It is important to note that the existing disabling condition and other risk factors work in combination, and that secondary conditions can have many consequences. The example of J.R., described in the first box, illustrates some of the feedback loops involved in the development of secondary conditions that influence the nature and severity of the condition's effects. J.R.'s experience clearly demonstrates the importance of the life course perspective on longitudinal health care, as well as the significant role played by nonmedical factors. Surveillance and Epidemiological Understanding Although clinical experience has generated a long list of secondary conditions that frequently occur in people with disabling conditions, epidemiological information on the incidence and prevalence of secondary conditions and on the underlying causative factors is sparse. This epidemiological blind spot is emblematic of existing data systems that do not contain information about the causes of the specific disabling conditions. Thus it is extremely difficult to determine to what extent a person's disability is the result of primary or of secondary conditions. A partial exception is the National Health Interview Survey (NHIS), which asks respondents with disabling conditions to list the main cause of their disabling condition, as well as of other conditions that may be involved. In addition, the NHIS collects information on the onset of conditions in these people. But because this information on the timing of onset is very general, it is often impossible to determine the order in which the conditions occurred, and the distinction between primary and secondary conditions can rarely be made. LaPlante (1989b) analyzed NHIS data to determine the frequency of co-occurrence for 22 conditions or groups of conditions. A variety of conditions were found to co-occur more frequently than expected, indicating a possible causal relationship. For example, the prevalence of hypertension and asthma among people with disabling conditions was 2.63 per 1,000 persons—more than four times the expected rate. LaPlante notes that NHIS data can also be used to ascertain the extent of activity limitation associated with co-occurring conditions, but adds that "understanding of the causal models underlying statistically dependent conditions must come from other sources of information." The true magnitude of secondary conditions is not known, but several studies suggest that it is large. For example, about 40 percent of all people with activity limitation report multiple conditions as the cause of limitation. As discussed in a previous chapter, the prevalence of multiple conditions among people with activity limitation has been increasing. But, again, the factors contributing to this increase cannot be determined with existing data. This increase may include a rising rate of secondary conditions, but it
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Disability in America: Toward a National Agenda for Prevention J.R. is a 29-year-old man who became quadriplegic from a spinal cord injury sustained after an automobile crash five years ago. He has function only at the level of C5 and above. Therefore, he has no effective use of his hands or his body below shoulder level. In addition, he has sensation in the skin only over the head, neck, upper shoulders, and outside arms. Following his initial injury he was hospitalized for 9 months, receiving comprehensive rehabilitative care. During the next 4+ years since his discharge from the rehabilitation hospital, several problems occurred that reduced his independence and his quality of life. During the first two years after discharge, his bladder periodically became infected which led to two- to three-week periods of high temperatures, marked fatigability, and inability to function at his best level. These infections were caused by a catheter that was inserted during his stay in a nursing home immediately after his discharge from the rehabilitation hospital. However, living now with an attendant in an apartment and utilizing intermittent catheterization for control of his bladder, J.R. has had only one minor infection during the last two years. While in the nursing home, J.R. developed pressure sores over the ischial tuberosities (from sitting in a chair that had no mechanism for pressure relief). At the time, he had difficulty in getting funding for a power recline chair and thus sat for long periods in a standard high-backed wheelchair with a standard cushion, which was not sufficient to keep him from developing ischial pressure sores. As a result of these pressure sores, he was admitted to an acute hospital for two weeks and subsequently referred back to the nursing home. For a period of eight weeks, he was not able to sit up in a chair but rather had to move from place to place on a cart in order to avoid pressure over the healing sores. Because of his continued dependency in the nursing home and the unavailability of privacy or people of his own age in the institution, J.R. became depressed for approximately four months. During this period he contributed little to his own self-care, had no interest in developing either vocational or recreational activities, and tended to alienate those about him because of his passivity. He was so inactive for a while that he developed thrombophlebitis of the deep femoral veins. Treating this condition required surgery to place a device in his inferior vena cava that would prevent migration of clots to the lungs; otherwise, sudden death from pulmonary embolism might occur. At the time of his discharge from the rehabilitation hospital, J.R. had spasticity that primarily involved the lower extremities but that did not substantially interfere with his activities. However, he subsequently developed increased tightness and episodes of "jumping" of the legs that made his balance in the wheelchair precarious and interfered with his sleep at night. More recently, with a regular program of stretching, control of his bowel and bladder functions, and adequate positioning when sitting up in his chair and when lying in bed, he has had little functional problem with the continued spasticity in his lower extremities.
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Disability in America: Toward a National Agenda for Prevention J.R. quickly depleted all of his financial resources and was dependent on Medicaid for payment of his health services for the first three and a half years after his injury. At two years after his injury, his medical expenses were supplemented through Medicare. He also was placed on Social Security six months after his injury because he had worked regularly prior to his injury. Initially, J.R. was also dependent on public housing assistance (Section 8) and waited three and a half years for an appropriate apartment with adequate accessibility (resulting in the prolonged stay in the nursing home). Prior to his injury, J.R. had been a drafting technician. After his injury, J.R. developed the capability of working in an adapted work station as a receptionist in an architectural firm. However, he found the income from this position to be too high to retain his eligibility for Social Security, Medicare, and Medicaid and yet not sufficient to cover the costs of his medical transportation and attendant care needs. As a result, he was unable to continue working even though he found significant satisfaction from it. could also reflect an increase in independent conditions or be the result of other factors, such as increased access to health services and improved health awareness. The paucity of data also limits the ability to accurately estimate the economic costs associated with secondary conditions and, therefore, the potential savings that can be achieved with effective interventions. Advocates of people with disabling conditions and clinicians who treat them generally agree that the associated costs are substantial, and that significant savings can be achieved with consistent, appropriate programs of medical care, rehabilitation, and social support. An example is suggestive of the potential savings. The Committee on Trauma Research (National Research Council, 1985) reported that 35 percent to 40 percent of the estimated 200,000 people with spinal cord injury develop pressure sores of varying severity. Because the average cumulative cost per pressure sore is an estimated $58,000 (National Institute on Disability and Rehabilitation Research, 1990), the savings from preventing this avoidable secondary condition are likely to be large. A disability surveillance system is needed to collect data on the incidence and prevalence of secondary conditions, including psychiatric conditions. These data are needed to improve understanding of risk factors associated with secondary conditions and to guide development of effective intervention strategies for preventing secondary conditions.
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Disability in America: Toward a National Agenda for Prevention Mental Health Conditions Potentially debilitating illness or injury elicits psychological and behavioral responses that are peculiar to each individual. Despite the diversity of responses, the stresses and other forces that persons with disabling conditions must confront are often quite similar. The two examples given in the second box are illustrative. The similarities between the two patients are striking; yet the first patient appears to be adapting positively, whereas the second patient exhibits symptoms of major depressive disorder. The second patient's psychological state underlies his failure to comply with his prescribed dietary and exercise regimen, which elevates the risk of developing a secondary condition. The finding by Wells and colleagues (1989) that "depression and chronic medical conditions had unique and additive effects on patient dysfunctioning" is especially pertinent to the care of people with disabling conditions. Depression following the loss of function is common and usually treatable. Krueger (1981) describes depression as a normal and expected response. "If it does not occur, even transiently," Krueger advises, "an alarm should sound because its absence indicates the reality of the loss has not been emotionally recognized." Prolonged depression is not inherent, and in most patients it abates within weeks or months without intervention. Careful psychiatric monitoring can alert the physician to the danger of prolonged depression, permitting early intervention. Krueger also points out that the more a person's disabling condition interferes with his or her work, recreation, self-esteem, or normal coping mechanisms, the more psychologically devastating the condition will be. While finding that there is no characteristic pattern of psychological response based on type of disabling condition, Gallagher and Stewart (1987) report that anger, depression, and anxiety increase with the severity of the disabling condition. Researchers (Gallagher and Stewart, 1987; Castelnuovo-Tedesco, 1981) also have found that the severity of the psychological response is inversely related to the age at which the disabling condition is acquired. In terms of psychological vulnerability, according to Castelnuovo-Tedesco, the least unfavorable time for a disabling condition to develop tends to be after stable adult integration has occurred. A person's mental health prior to the onset of a disabling condition and other antecedent variables appears to influence the likelihood and intensity of psychological complications. Factors predictive of depression following physical illness or injury include a personal history of depression, a family history of depression, and a predisposition to depression based on a personal history of early parental loss or childhood trauma (Krueger, 1981). Brodsky's (1987) examination of motivational issues in a population of people who sustained job-related injuries elucidated several nonmedical factors
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Disability in America: Toward a National Agenda for Prevention Patient 1 is a 44-year-old white, Protestant, married physician who is the father of three teenage children and suffers an occlusion of the anterior descending coronary artery. After three weeks in the hospital, he returns home on a regimen of aspirin, a low-cholesterol diet, and a systematic exercise program. When his cardiologist sees him for a follow-up visit after two months, the patient has returned to his medical practice and reports that he has lost 7 lbs. In addition, the patient describes the resumption of his sexual life, his usual parenting activities, and leisure time pursuits. While still somewhat anxious about his prognosis, he requires no psychiatric intervention or psychotropic medication. Patient 2 is another 44-year-old white, Protestant, married physician who is the father of three and who suffers an occlusion identical to that of Patient 1. After three weeks in the hospital, he also returns home on a regimen of aspirin, a low-cholesterol diet, and a systematic exercise program. However, when his cardiologist sees him for a follow-up visit, after two months, Patient 2 and his wife report that he constantly feels tired, stays in bed, avoids exercise including sex, and has made sporadic visits to his office but has not seen patients. On interview, the patient reports being terrified of a fatal recurrence of the myocardial infarction. In addition, he is having difficulty sleeping, eats sporadically but not in accord with his diet, can't enjoy sex and other pleasurable activities, and feels that his active life is over and that he is "no longer a man." Although there is no difference between the cardiac status of Patients 1 and 2, four months later Patient 2 is still unable to return to work and his family life is colored by his inability to resume his functions as an effective father and husband. that play significant roles in the occurrence of work disabilities. One such factor is the degree to which an individual has been socialized for work and thus the degree to which personal worth and success are defined in the context of one's occupation. Similarly, level of educational attainment is also related to the risk of work disability. Brodsky maintains that with increasing educational attainment comes a greater belief in the intrinsic rewards of work, a greater likelihood of extrinsic rewards derived from work, and a more intellectually rewarding content of work. Some of the workers in the Brodsky study who developed disability perceived themselves prior to injury as physically, emotionally, or intellectually inadequate, a perception underlain by a variety of factors including those related to age, job-personality fit, and family relationships. For these individuals, disability is a more likely outcome than for those who do not feel inadequate on the job. The nature of the work performed also influences the outcome of work-related injury: low pay, boring and repetitive work, and heavy physical
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Disability in America: Toward a National Agenda for Prevention labor are associated with increased disability. Lack of on-the-job autonomy, adversarial employee-employer relationships, poor communication, and discrimination were all found by Brodsky to increase the chances that disability would result from work-related injury. More research is needed to identify risk factors for secondary mental health conditions, clarify the role of these factors in contributing to additional disability, and develop effective interventions to prevent secondary psychiatric conditions. Research should include evaluations of the interactions and contributions of biological and psychodynamic factors such as perceptions of the significance and meaning of disability; the availability of familial, social, and cultural support; and perceived prospects for personally gratifying future activity. COMPONENTS OF A COMPREHENSIVE PREVENTION PROGRAM People with disabling conditions and those who treat these conditions generally believe that the techniques used to minimize the physical, psychological, and social effects of primary disabling conditions also are beneficial in the prevention of secondary conditions. This consensus is largely the product of intuition rather than rigorous scientific evaluation of interventions. Nevertheless, since secondary conditions are often predictable, they also should be preventable. There is a paucity of empirical evidence on the effectiveness of preventive approaches for at least two reasons. First, the lack of valid, reliable assessments for determining what works and what does not work extends to virtually all areas of health care, not just disability. Second, the widely held view that disabling conditions are unchanging, static (or worse, inevitably deteriorating) conditions has limited the amount of attention devoted to prevention of secondary conditions. Limits to our knowledge mean that, at least in the short term, efforts to prevent secondary conditions will be developed largely on a trial-and-error basis. However, the committee believes that service providers and people with disabling conditions can increase the probability of success in preventing secondary conditions by adhering to some fundamental principles. For example, practices that promote general well-being and good health are as critical to people with disabling conditions as they are to those who are free of limitations. In fact, available evidence suggests that health-promoting behaviors may be more important to the population of people with disabling conditions, given their elevated risk for secondary conditions and, consequently, for negative effects on the quality of their lives. In addition, service providers also should strive to deliver services that are comprehensive and
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Disability in America: Toward a National Agenda for Prevention integrated. Obviously, the mix of services is contingent upon levels of available public, private, and personal resources. Nonetheless, the effectiveness of each element within a particular set of services is enhanced if the elements are comprehensive, well coordinated, and integrated from the perspective of the client. In general, the prevention of secondary conditions in people with disabling conditions requires a comprehensive approach that includes at least the following components: (1) organization and delivery of services; (2) availability of appropriate assistive technologies, as well as adequate training in the use of these technologies; (3) adoption of health-promoting behaviors; (4) education; and (5) consideration of environmental factors. The following sections discuss these components as they relate to the development of effective intervention strategies for the prevention of secondary conditions. Organization and Delivery of Services Preceding chapters have discussed the incongruity that characterizes the current patchwork of public and private health care and social services for people with disabling conditions. Services are compartmentalized and poorly coordinated, whereas the needs of people with disabling conditions are overlapping and long term. Even if the full spectrum of needed services are available, it is unlikely that services will be well integrated and easily accessible. More than half of the respondents in a 1986 survey of Americans with disabling conditions said it was "somewhat hard," "very hard," or "almost impossible" to identify available services (Louis Harris and Associates, 1986). Because of the service system's fragmented organization and its emphasis on acute conditions, many people with disabling conditions are underserved and little attention is focused on prevention. One consequence is the occurrence of avoidable secondary conditions that worsen a disabling condition and increase the need for services. Observers of the U.S. health care system often note that form follows funding. That is, funding policies directly determine the makeup of available services. Current funding policies, however, do not reflect the needs of people with disabling conditions; therefore, available services often do not provide the appropriate types and levels of care. Programs for income maintenance, rehabilitation, health care, and independent living are governed by their own separate policies rather than by an encompassing, unified disability policy. Funding for health care and social services should follow client needs. But the needs of people with disabling conditions are diverse, and their requirements for services are equally diverse. Although a range of services should be available, not every person with a disabling condition will require all of these services. Thus funding of the health care and social service
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Disability in America: Toward a National Agenda for Prevention Education of Health Care Professionals Most schools of medicine, nursing, and allied health have not properly prepared health care professionals to address problems and issues related to disability and chronic disease. Medical schools, for example, rarely include rehabilitation as a standard clinical rotation, nor do they foster the interdisciplinary skills and the commitment to teamwork that are necessary to address the varied needs of people with disabling conditions. The complexity of problems associated with chronic illness and disability demands that all health care professionals become familiar with the rehabilitation process and the importance of evaluating the entire social situation of the person with a disabling condition. In medical schools, the likely locus for this responsibility would be a department of physical and medical rehabilitation (PMR). Unfortunately, most medical schools do not have such a department, although the Graduate Medicine Education National Advisory Committee identified PMR as one of three medical specialties with personnel shortages. The shortage of PMR specialists underscores the importance of acquainting all future health care professionals with the needs of people with disabling conditions. Specific accreditation criteria are needed for assessing whether medical schools provide adequate education on the prevention of disability and secondary conditions and on the rehabilitation of people with physical or mental disability. In addition, training in disability prevention and in rehabilitation should be included, as appropriate, in the education of medical specialists. Similarly, schools of nursing and allied health should include the prevention of physical and mental disability and of secondary conditions in their curricula. Given the prevalence of disabling conditions in the general population and the demographic trends, ever larger numbers of practicing health care professionals will be called on to provide treatment, health maintenance, and related services to people with chronic disease or disabling conditions. The continuing education of physicians and other health care professionals should include training on the risks of secondary conditions and on general methods of rehabilitation. Education of People with Disability Information, it has been said, is power. This adage certainly applies to people with disabling conditions, who should retain primary responsibility for decisions affecting their health and quality of life. The problem, however, is that people with disabling conditions need sound information on
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Disability in America: Toward a National Agenda for Prevention which to base their decisions. Often the information is not available; if it is, it frequently must be gathered from disparate, hard-to-identify sources. In this "information age," one often hears that information overload is a problem—but this is not the case for people with disabling conditions. Numerous data bases on assistive technologies exist, for example, but most are small, and they often contain incomplete or outdated information. Very few of these data bases achieve the desirable end of providing links among people with disabling conditions, health care professionals, and manufacturers of assistive technologies. It would be naive to assume that comprehensive information networks—which might include information on community health and social services, assistive technologies, nutrition, and medications— can be developed overnight. But the tools do exist, and steps to achieve this goal could be undertaken incrementally. Independent living centers, many of which have developed data bases that provide at least some of the information people with disabling conditions need, offer a foundation on which to build comprehensive local information networks. Technology, however, will never replace face-to-face interaction as a means for imparting necessary information and teaching important skills. If we expect people with disabling conditions to take primary responsibility for their well-being, then physicians and other service providers must advise their patients on how to maintain or improve their health status and reduce the risk of secondary conditions. Moreover, physicians must be prepared to counsel their patients and families on the strengths and limitations of alternative modalities of care, including potential impacts of these modalities on quality of life. There is also an important ancillary role to be played by formal education programs on a variety of topics, including health promotion, assistive technologies, stress control, and home safety. These could be developed under the auspices of public health departments; departments of preventive medicine, geriatrics, or physical medicine and rehabilitation at local medical schools; independent living centers; local rehabilitation centers; foundations; and voluntary organizations. Educational programs on topics related to the prevention of secondary conditions need to be expanded with emphasis placed on reaching people with disabling conditions, their families, advocates, and personal attendants. Finally, persons with disabling conditions need to be taught skills that will help them live full, rewarding lives. Good organizational and time management skills can assist these people in compensating for their functional limitations, and training in these important skills is often necessary.
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Disability in America: Toward a National Agenda for Prevention In addition, functional limitations often make it difficult, if not impossible, for adults with disabling conditions to return to their old jobs without training and modification of the work environment. Some will not be able to return to their previous occupation at all, necessitating training in a new skill or profession. Thus vocational training is often critical to ensuring one's return to the work force. Environmental Considerations The quality of life of a person with a disabling condition is closely linked to the person's social and physical environment, on both large and small scales. Because of the multifaceted nature of this relationship, trade-offs may be necessary. Someone who uses a wheelchair and lives in a northern state, for example, may be forced to limit his or her outdoor activities during the winter months because of icy conditions and low temperatures. A person who has the same limitation but lives in the South or Southwest will confront far fewer weather-related barriers. For many people, however, relocating to an area with a more benign climate is not financially feasible or even desirable. Moving may entail loss of friends and family contacts, loss of job, and other costs that outweigh climate-related advantages. When the focus shifts to the individual's general surroundings, other important variables come into play, such as proximity to health services, work, stores, recreational establishments, and family and friends; accessibility to buildings and public transportation; availability of housing; and opportunities for employment. Not all of these variables are under the control of the individual. For example, social attitudes and public policy are the primary determinants of whether public buildings are accessible to people in wheelchairs or whether local employers are willing to invest in the workplace modifications that may be required by people with disabling conditions. Distance to needed services, however, may be within the control of the individual. Generally, the greater the distance to services, the more dependent a person with a disabling condition is on the assistance of others. Thus a person who lives in an urban environment may be more autonomous in his or her personal affairs than someone who lives in a rural area and must depend on others for transportation and to make necessary purchases. The home environment introduces new considerations that are primarily related to safety and to the performance of basic living activities. Financial resources and the reimbursement policies of public and private insurers are the primary determinants of whether the immediate living environment is adapted to the needs and capabilities of the person with a disabling condition. Many "off-the-shelf" assistive technologies can be instrumental in promoting greater autonomy. But, as discussed previously, these technologies often do not qualify for insurance coverage.
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Disability in America: Toward a National Agenda for Prevention PROTOCOLS FOR THE PREVENTION OF SECONDARY CONDITIONS Although many secondary conditions can be prevented, interventions are often ineffective because they fail to address the multiple risk factors related to the pathophysiology and life situation of the person with a disabling condition. To be successful, interventions must be multifaceted and comprehensive. The most effective prevention programs are longitudinal in nature and embody a variety of strategies, devised and carried out by a multidisciplinary team. Protocols would foster the integration and comprehensiveness essential to the prevention of secondary conditions. A protocol lists the evaluation, treatment, and service delivery strategies that apply to a specific type of disabling condition and to the characteristics of the person with the disabling condition. Developed prospectively from general information, protocols serve as generic guidelines that assure completeness in the development of individual treatment and service plans. Often, a protocol will list several options for each element in the individualized plan. Specific interventions are chosen in light of the special circumstances of the person with the disabling condition. As frameworks on which to build individualized plans, protocols must reckon with variability. The pathological processes that underlie a secondary condition vary considerably; they can stabilize after an acute event, fluctuate in severity over time, or be progressive. Similarly, the amount of additional disability that can result encompasses a broad range, influencing, for example, the decision of whether to prescribe major medical treatment or to rely on compensatory assistive technology. Moreover, the interactive relationship between the risk of secondary conditions and social, economic, and environmental characteristics introduces more variability that must be anticipated in the development of protocols. Currently, protocols to guide the development of effective prevention programs are few. As noted previously, a serious obstacle is the paucity of evaluative information on the effectiveness and outcomes of interventions for many secondary conditions. Evaluative studies are needed to determine the effectiveness and costs of interventions for major secondary conditions. As part of this effort, consensus conferences should be conducted to review existing knowledge in those areas where research and clinical experience are sufficient to develop model protocols for the prevention of secondary conditions. As the primary sponsor of effectiveness and outcomes research, the Agency for Health Care Policy and Research would be the appropriate agency to assume leadership in initiating these activities.
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Disability in America: Toward a National Agenda for Prevention The nature of these recommended initiatives will differ somewhat from the effectiveness and outcome research and the protocol development going on in other areas of health care. One important distinction is the especially significant role played by social and environmental risk factors in the occurrence of secondary conditions. Another is the emphasis of preventive interventions on improving quality of life. The remainder of this chapter focuses on the general components of protocols for the prevention of secondary conditions. Definition of Disability Category The initial step in protocol development is to determine the category of the disabling condition. Ordinarily, a diagnostic category reflects what is known about the pathologic process, including the etiology and the anatomic site of involvement. Individual cases within a given diagnostic category will vary widely in their course. Recognition of this variability at the outset helps alert care providers using the protocol to the importance of evaluating alternative interventions. The protocol should also list secondary conditions associated with the category. Supporting informational elements include descriptions of the signs and symptoms of the pathologies, impairments, and functional limitations that can lead to a secondary condition and additional disability. For each secondary condition, the range of potential outcomes should be specified. Specification of Health Maintenance and Medical Interventions The importance of preventive measures should be recognized at the outset of treatment for a disabling condition, and major emphasis on these measures should be sustained throughout the life of the person with the condition. As discussed previously, the cornerstones of a healthy lifestyle for people with disabling conditions are the same as those for people without disabling conditions. They include regular exercise, appropriate nutrition, weight control, abstinence from smoking and illicit drugs, moderate consumption of alcohol, stress control, and adequate sleep. Strategies for accomplishing these healthful behaviors often must be tailored to the particular needs and functional limitations of the person with a disabling condition. A person with restricted motion of the joints, for example, will require assistance in performing stretching exercises, and adaptive equipment may also be needed. Failure to accommodate these needs increases the risk of contractures, pressure sores, and other secondary conditions. When possible, protocols should spell out the risks of developing secondary conditions when specific health promotion and maintenance objectives are not fulfilled. Medical interventions are often prescribed to minimize the effects of the
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Disability in America: Toward a National Agenda for Prevention existing disabling condition. The protocol should familiarize providers with the potential iatrogenic effects of medications and other interventions commonly prescribed for people with a specific category of disabling condition. Drug side effects, for example, may increase the risk of developing a secondary condition. If the primary disabling condition or other existing factors pose a high risk of secondary conditions, the physician should consider medical interventions for reducing the risk. Changes in bladder functioning and emptying dynamics following spinal cord injury, for example, require intermittent catheterization or other bladder management techniques. A consequence of these interventions is often an elevated risk for urinary tract infections. Thus the protocol for the care of people with spinal cord injury should include alternative strategies for bladder management and for reducing the risk of urinary tract infection. Specification of Rehabilitation Interventions Rehabilitative measures intended to minimize the effects of disabling conditions must be an integral part of protocols for preventing secondary conditions. Protocols should list measures that focus on the primary disabling condition and, where appropriate, on secondary conditions that are directly or indirectly related to the primary disabling condition. For instance, weakness of an extremity is common after plexus injury that involves nerves in the extremities. The nerve damage then predisposes the affected individual to contractures of the joints and muscles of the involved extremity; the contractures are secondary to the original pathology. Ordinarily, the more remote a secondary condition is from the original pathology, the greater the likelihood of success in preventing its occurrence, assuming appropriate interventions are applied. Rehabilitation should focus on permitting the person with a disabling condition to perform the normal roles of life, with or without assistance. Accomplishing this goal entails decisions that require reckoning with trade-offs and evaluating the improvement in functioning that can result from intervention in medical and nonmedical contexts. The prospects for successful rehabilitation are also influenced by predisability personality traits, and these need to be taken into account in the development of a rehabilitation protocol. Krueger (1981) notes that people who tend to be overly conscientious and strive for independence have traits that bode well for rehabilitation. Tucker (1984) makes the important points that motivation is a critical determinant of rehabilitation success and that motivation is both an intrapersonal and interpersonal phenomenon: If a patient is consistently devalued, is not given support for progress, and receives a hopeless prognosis, he or she will give up and appear
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Disability in America: Toward a National Agenda for Prevention unmotivated. Once such a derogatory label is applied, it is a signal that rehabilitation efforts will fail. But if the person is given positive feedback, the individual's motivation to strive will be enhanced. Potentially, a beneficial cycle or ''recipe for motivation" can emerge. If the potential for improvement is only marginal, then the impact on the person's lifestyle may be insignificant. Therefore, it may be more fruitful to reallocate resources from physical therapy to purchasing assistive technology and training the person to use that technology. The impact of assistive technology on the individual's quality of life may be far greater than the minor improvement in functioning achieved with extensive occupational and physical therapy. Specification of Assistive Technologies Appropriate assistive technology can significantly reduce the impact of disabling conditions on personal autonomy and participation in the everyday affairs of society. Selection of assistive technology should be done in collaboration with the person with the disabling condition, who should identify the tasks that are most significant to maintaining his or her lifestyle. Assistive technologies offer two separate but related strategies for helping to ensure personal autonomy. Some devices are used by the individual to improve function. Other technologies involve modifying the environment so that the person can accomplish tasks that would not otherwise be possible. Product quality and costs are major considerations in the selection of assistive technologies. Initial cost savings, however, should not be achieved at the expense of reliability and quality. Moreover, protocols must acknowledge the importance of training individuals in the use of assistive devices and of providing maintenance services. Specification of Environmental Changes Although several steps in the protocol are concerned with issues related to environmental surroundings, explicit consideration of potential modifications is essential. The primary goals of these modifications are to ensure safety and to facilitate performance of tasks important to the individual. Inspection of the home and general neighborhood will be necessary to determine what modifications are necessary and the feasibility of making needed changes. Specification of Elements in the Social Support Network People with disabling conditions often live an isolated existence, dependent on others to initiate social contact and even to arrange for needed
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Disability in America: Toward a National Agenda for Prevention services. Depression and neglect of self-care are two of several common consequences of isolation that increase the risk of developing a secondary condition. Protocols must consider the availability of informal and formal social support mechanisms that foster social interaction and assist in the identification and procurement of needed services. Care providers should familiarize themselves with the individual's family situation and determine whether family members or friends are available to provide assistance as needed. They should also be familiar with available community resources. If an independent living center or other advocacy organization exists, providers should link the individual to these resources. Peer support is an especially critical component of efforts to prevent secondary conditions. A support network should be developed not only for the person with a disabling condition but also for his or her family. The form that these networks should take cannot be specified in advance because of the considerable variability among families. For some, regular, informal get-togethers may be sufficient. For others, more formalized measures, such as support group sessions offered by hospitals or rehabilitation facilities, may be needed. In conclusion, protocols help ensure that the total spectrum of needed interventions are incorporated into individualized treatment and service plans. Such guidance is useful to all health care and social service professionals who work with people with disabling conditions. It is especially valuable for the many care and service providers who have little knowledge of the often debilitating effects of secondary conditions. Protocols will not substitute for good professional judgment in formulating effective treatment and service plans. As problem-solving aids, protocols help facilitate the development of treatment plans that are comprehensive and integrate the necessary elements of care. Moreover, professional efforts to develop needed protocols will systematically focus attention on those areas lacking interventions that have been evaluated for effectiveness. Such a systematic approach will highlight critical research needs and guide development of future prevention programs. Table 7-3 summarizes much of the information presented in this chapter. It is included as a guide for those who are interested in what information about the prevention of secondary conditions is available, and what is not known and needed. The information is organized into four categories: services, education, research and surveillance, and coordination and oversight.
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Disability in America: Toward a National Agenda for Prevention TABLE 7-3 Known vs. Needed Information About the Prevention of Secondary Conditions Category Known/Available Unknown/Needed Services Assistive technology is capable of decreasing disability and is in a rapidly expanding era with new innovations on the horizon. Where efficacious, assistive technology should be paid for as part of clinical care if it allows for life activities including work, social, recreation, and activities of daily living. Protocols aid in disability prevention and rehabilitation planning and in the identification of potential physical and psychiatric secondary conditions. Protocols and screening instruments are needed to identify, prevent, and treat potential secondary complications, both physical and psychiatric. Psychiatric consultation should be available to all rehabilitation personnel for patient monitoring and treatment. Education Medical school and speciality training impart insufficient knowledge and skills in principles of physical medicine and rehabilitation and psychosocial rehabilitation. Medical school and appropriate speciality training should include curricular material in PMR and psychiatric principles appropriate to identify potentially disabling complications of illness and injury: the curriculum also should include material on appropriate preventive interventions, including consultation and collaboration. Parallel training for nurses and allied health professionals is recommended. Model protocols should be useful for these training curricula. Allied health professionals and consumers lack knowledge of disability prevention. Consumers and the public require education about the needs of those with disability. Rehabilitation personnel are often unaware of psycho-educational approaches and processes. Students, trainees, and professionals in rehabilitation disciplines should be trained in identification of behavioral and major mental illnesses, and the appropriate interventions and/or consultations.
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Disability in America: Toward a National Agenda for Prevention Category Known/Available Unknown/Needed Practitioners are unable to maintain skills and knowledge at a level of current need to deal with disability prevention, particularly with secondary conditions. Postgraduate education should include physical and psychosocial principles and identification of secondary conditions with appropriate referral. Medical schools often lack curricula and departments of rehabilitation. The Liaison Committee on Medical Education of the American Association of Medical Colleges (AAMC) should develop more specific criteria for accreditation of medical schools regarding adequate exposure to rehabilitative principles and practice. The AAMC's Accreditation Council for Graduate Medical Education should also require training in primary, secondary, and tertiary disability prevention principles and treatment planning for appropriate medical speciality trainees. Assistive technology is a growing aid to rehabilitation and disability prevention. Curricula in assistive technology should be included in training for PMR, undergraduate medical education, and allied health, nursing, and related disciplines. Research and surveillance Spinal cord injury (SCI) is the only condition for which there exists surveillance of secondary disabilities. Disability surveillance systems should include incidence and prevalence of secondary conditions, including psychiatric complications. When depression occurs as a comorbid condition with SCI, there is a high comorbidity of depression and other psychiatric complications, as well as a high correlation with physical complications such as contractures and decubiti. Research is needed to determine how intervention affects the prevention of secondary conditions, including psychiatric complications.
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Disability in America: Toward a National Agenda for Prevention Category Known/Available Unknown/Needed Protocols can be useful in effective treatment planning, especially for trainees and for professionals with less specific training. Assessment is needed of the efficacy of protocols for treatment of primary disabling conditions and prevention of physical and psychiatric secondary disabilities. Assistive technology can prevent some secondary disability (e.g., motorized wheelchair mobility and access to work, social activity, and recreation). Support is needed for further research and development of assistive technology and its effect on secondary disabling conditions. Coordination and oversight Responsibility for research, service, education, and funding is under multiple state and federal auspices. An interagency council or forum is needed to serve as the coordinating body for the prevention activities of all federal agencies. The National Institute on Disability and Rehabilitation Research (NIDRR) and the Veterans Administration sponsor and conduct large programs in rehabilitation research that are focused on secondary and tertiary care. NIDRR also directs the Interagency Council on Disability Research. The Centers for Disease Control (CDC) should provide leadership in setting the national agenda and direction in services, research, and surveillance in the prevention of disability. CDC's new Disabilities Prevention Program draws on its expertise in epidemiology, surveillance, and technology transfer in sponsoring prevention activities. Improved coordination is needed with increased emphasis on multidisciplinary approaches to prevention.
Representative terms from entire chapter: