The Future of Disability in America (2007) / Chapter Skim
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5 Secondary Conditions and Aging with Disability
5 Secondary Conditions and Aging with Disability
Pages 136-161
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From page 136... ...
For clinicians, researchers, policy makers, and others, the challenge is, on the one hand, to prevent or delay secondary conditions and premature aging and, on the other hand, to prepare for and mitigate their effects, once they develop. Meeting this challenge will involve progress on several fronts, including improving professional and consumer awareness and responses based on existing knowledge, strengthening further that base of knowledge, developing supportive public policies, and identifying and removing environmental barriers such as inaccessible transportation systems.
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From page 137... ...
report Dis TABLE 5-1 Age of Disability Onset for Individuals with Disabilities by Category of Disability, 1994 Percentage of Individuals with Disability Onset at Age: Type of Disability At birth >0–19 20–24 25–44 45–65 65–74 75+ ADL 4.1 4.5 2.7 18.3 25.2 18.9 26.3 IADL 3.9 4.9 3.2 22.3 29.4 18.8 17.5 PLIM 2.3 5.1 4.1 27.0 31.7 16.7 13.1 NOTE: ADL = limitation in activities of daily living; IADL = limitation in instrumental activities of daily living; PLIM = limitation in physical tasks. Data are from the National Health Interview Survey Disability Supplement, Phase 1 (1994)
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From page 138... ...
. In addition, the National Institute on Disability and Rehabilitation Research has funded three relevant research centers, one focusing on aging with a disability, a second one focusing on aging with developmental disability, and a third one focusing on secondary conditions.
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From page 139... ...
1 SECONDARY CONDITIONS AND AGING WITH DISABILITY In addition to clinical care, tertiary prevention may involve environmental modifications, such as changes in household technologies or arrangements that reduce the risk of falls or that help a person remain independent in self-care. Tertiary prevention also extends to the policy arena, for example, through the removal of barriers and hazards in public spaces and the adoption of policies that help people pay for home modifications or assistive technologies.
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From page 140... ...
has, for example, stressed such psychosocial issues as helping children with disabilities to develop a strong sense of self-worth that will prepare them for sometimes negative attitudes from peers, health care professionals, and others. Others have also pointed to the influence of personal factors, in particular, styles of coping with adversity (see, e.g., Hansen et al.
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From page 141... ...
For example, as discussed later in this chapter, people with significant mobility limitations -- which might be related to spinal cord or brain injury, multiple sclerosis, or a number of other conditions -- are at risk of pressure ulcers or contractures. As more longitudinal research is undertaken, more linkages and common risk factors may be identified.
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From page 142... ...
Clinically, an inability to make distinctions between features of the primary health condition and secondary conditions may not affect individual patient care. Another distinction is between secondary conditions and comorbidities.
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From page 143... ...
, health care practices (e.g., screening and treatment for heart disease) , and other environmental circumstances (e.g., working conditions)
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From page 144... ...
SELECTIVE REVIEW OF THE LITERATURE Despite the many complexities and questions surrounding the definition of secondary conditions, consumers, practitioners, and researchers have adopted the concept as a useful way of understanding certain potentially preventable health conditions that can contribute to additional disability. Researchers are generating an increasing amount of information about secondary conditions, usually in studies of specific primary health conditions, such as spinal cord injury.
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From page 145... ...
Most studies focus on biological and clinical processes and health outcomes. Some consider or acknowledge the contribution of environmental or personal factors, such as a lack of health insurance coverage for relevant services or equipment (e.g., a proper wheelchair)
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From page 146... ...
These organized and focused care settings can support systematic data collection, surveillance, and ongoing research, including research on secondary conditions. Research on spinal cord injury has been consistently funded through the model systems programs of the National Institute on Disability and Rehabilitation Research and the National Center for Medical Rehabilitation Research and through the Veterans Health Administration with support from the Paralyzed Veterans of America.
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From page 147... ...
Individuals may not, however, be able to take advantage of improved equipment and proper evaluations if their health plans have outdated coverage policies and criteria (see Chapter 9 for a discussion of coverage for assistive technologies and services)
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From page 148... ...
has been particularly active in promoting the development of evidence-based clinical practice guidelines on the prevention and management of secondary conditions through the Consortium on Spinal Cord Medicine (CSCM)
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From page 149... ...
. Given the predominance of cross-sectional and case series reports in the literature reviewed here, longitudinal controlled studies are needed to confirm the prevalence of pain in people with cerebral palsy, map the types and the sites of pain, identify the etiology, and evaluate prevention and intervention strategies.
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From page 150... ...
. On the basis of concerns that exercise might be a risk factor rather than a protective factor, a number of studies have investigated the effectiveness and safety of exercise to improve strength, endurance, and function for polio survivors, generating recommendations for graded and monitored exercise (Dean and Ross, 1988; Jones et al., 1989; Einarsson, 1991; Grimby and Einarsson, 1991; Birk, 1993; Ernstoff et al., 1996; Spector et al., 1996)
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From page 151... ...
. Furthermore, some research suggests that postmenopausal women with Down syndrome and low serum estrogen levels are four times more likely to develop Alzheimer's disease than women with Down syndrome and higher hormone levels (Schupf et al., 2006)
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From page 152... ...
If joint instability is detected clinically or radiographically, individuals with Down syndrome may be placed under activity restrictions, especially those related to sports activities. Several follow-up studies of children with asymptomatic instability have, however, shown no development of subluxation or spinal cord compression with and without sports activity restrictions (Pueschel et al., 1992; Cremers et al., 1993a,b)
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From page 153... ...
The review reveals an increasing knowledge base as well as knowledge gaps. Gaps also exist in the education of health care professionals in caring for people with serious chronic conditions and disabilities.
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From page 154... ...
People with damage at the spinal cord level have difficulty with bladder function arising from a physiological mechanism different from that in people with bladder dysfunction caused by brain pathology (e.g., cerebral palsy, stroke, or a brain injury)
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From page 155... ...
and in women with spinal cord injuries, but the long-term benefits and effectiveness of these medications in preventing bone mineral loss are unclear. Research directions therefore involve several fronts.
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From page 156... ...
Education of Health Care Professionals Although a critical review of the similarities and differences in secondary conditions and aging conditions among categories of disability was beyond the resources of this committee, it is clear that clinical care for some groups has undergone a paradigm shift as longer life spans have brought new questions and new research. In general, as people with early-onset disabilities grow older, the conservation of function and the prevention of secondary conditions become high priorities.
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From page 157... ...
Education theory identifies attitudes, knowledge, and skills as requirements for competent patient care; and undergraduate, graduate, and continuing education for health care professionals is important in each of these three areas. Research on the provision of care for people with disabilities has noted negative attitudes among health care providers, but has also documented that education about disability and experience with people with disabilities creates more positive attitudes (Estes et al., 1991; Gething, 1992; Lindgren and Oermann, 1993; Oermann and Lindgren, 1995; Rainville et al., 1995; Ralston et al., 1996; White and Olson; 1998; Packer et al., 2000; Chan et al., 2002; Tervo et al., 2002)
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From page 158... ...
As exemplified in the PVA-sponsored guidelines for the prevention of secondary conditions related to spinal cord injuries, this will likely involve different information products and different dissemination strategies for these two groups. Organized knowledge in the form of evidence-based reviews is an important starting point.
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From page 159... ...
Improving the Education of Health Care Professionals As noted in the 1991 IOM report, "[m] ost 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" (p.
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From page 160... ...
Recommendation 5.2 calls for the development of such guidelines and for the formulation of disability-related educational modules and competency standards for health care professionals. The principles for the development of evidence-based practice guidelines have been articulated elsewhere, including in three IOM reports (IOM, 1990a, 1992, 1995)
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From page 161... ...
Recommendation 5.2: As part of broader efforts to improve the quality of care provided to people with disabilities, health care professionals, educators, people with disabilities, and their family members should work together to • develop, disseminate, and apply guidelines for the prevention and management of secondary conditions and for the monitoring and care of people aging with disability; • design educational modules and other curriculum tools for all relevant types of health care professionals and all levels of education; and • develop competency standards for these educational programs. Even with improved guidance and information, well-informed clinicians, and knowledgeable consumers, the maintenance of health and functioning can be difficult in the face of the environmental barriers that people with disabilities often encounter in daily life and in health care environments.
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