Charles E. Drum

Exercise Intervention Research on Persons with Disabilities: What We Know and Where We Need to Go

Rimmer JH, Chen M-D, McCubbin JA, Drum C, Peterson J: Exercise intervention research on persons with disabilities: What we know and where we need to go. The purpose of this article was to provide a comprehensive review of the exercise intervention literature on persons with physical and cognitive disabilities. Electronic searches were conducted to identify research articles published from 1986 to 2006. Of the 80 physical activity/exercise interventions identified in the literature, only 32 were randomized controlled trials. The remaining studies were nonrandomized controlled trials with (n = 16) and without (n = 32) a control group. There was a mixture of exercise training modalities that involved aerobic (26%), strength (25%), and combined aerobic and strength (23%) exercises, but there were no overlapping studies using the same dose of exercise for any of the 11 disability groups. Almost half the studies targeted stroke (20%), multiple sclerosis (15%), and intellectual disability (13%), with significantly fewer studies targeting other disability groups. The current literature on exercise and disability is extremely broad in scope and has limited generalizability to any specific disability group. A new body of evidence is needed with stronger research designs that adhere to precise dosing characteristics for key health outcomes (e.g., pain/fatigue reduction, improved cardiorespiratory health). Multicenter trials will be needed for low-prevalence populations to strengthen research designs and increase generalizability of study findings.

Self-rated health and healthy days: examining the "disability paradox".

BACKGROUND There is an important need to better understand how self-evaluations of health are reached among people with and without disabilities. The purpose of the present study was to use epidemiological data to confirm differences in self-rated health and health-related quality of life among people with and without disabilities, and to demonstrate that disability status influences how one thinks about self-rated health. METHODS Secondary analysis of cross-sectional data from the Behavioural Risk Factor Surveillance System (BRFSS). Health-related quality of life (HRQOL) core questions were asked, including self rated health, and the Healthy Days Index. Participants consisted of 303,822 adults (18 or older) from all states, the District of Columbia, and all U.S. territories who responded to the BRFSS in 2004. RESULTS Adults who self-reported an activity limitation or use of adaptive equipment reported poorer self-rated health, more recent days when physical health or mental health was not good, and fewer healthy days. Within the same SRH category, people with disabilities reported significantly more recent days when physical health was not good, more days when mental health was not good, and fewer healthy days than people without disabilities. CONCLUSIONS The findings suggest that people with disabilities may construct health or the self-rating process differently than persons without disabilities. Further understanding of the underlying process of health and HRQOL self-assessment may help elucidate the meaning of self-rated health among adults with and without disabilities. This conceptual disentangling of health from disability is necessary to track the achievement of national health objectives.

Guidelines and Criteria for the Implementation of Community-Based Health Promotion Programs for Individuals with Disabilities:

Health promotion programs for people with disabilities are in the early stages of development. This critical review utilizes a credentialed expert panel to develop a set of guidelines for community-based health promotion programs for individuals with disabilities. The procedures include a review of background material, systematic literature review with drafted guidelines consisting of operational, participation and accessibility recommendations. The role that those with disabilities can play is addressed and includes program planning, implementation and evaluation, physical and programmatic accessibility of programs, and importance of evidence-based practices.

The dilemma of measuring perceived health status in the context of disability

BACKGROUND Advances in the conceptual differentiation of health from disability have not been incorporated in popular measures of perceived health status. The inclusion of function in the measurement of health presents a dilemma for researchers assessing the perceived health of people with functional limitations. OBJECTIVES The purposes of the present paper are to identify this problem in health measurement, describe its implications for disability and health researchers, and outline potential strategies for future measure development of perceived health status. METHODS Reflecting the International Classification of Function, Disability, and Health, distinctions among the concepts of health, function, and disability are reviewed. Implications of confounded health measurement are discussed in terms of monitoring health status, assessing health disparities, using health as a mediator or moderator of other outcomes, and assessing effectiveness of interventions. The problem of function confounded with health measurement is illustrated with findings using the SF-36 with persons with spinal cord injury. RESULTS Recommendations are provided for developing function-neutral measures of perceived health status. CONCLUSION New measures of perceived health status are needed that do not confound function with health.

Disabilities and Health Toward a National Agenda for Research

The authors believe that a coordinated national agenda on health and wellness research regarding persons with disabilities that (a) focuses disparate national efforts and (b) advances a unified holistic model is needed. They propose a framework for such an agenda that includes five core principles and six issue areas, with recommendations. The five principles address good health as a normative expectation, a theory-driven knowledge base, heterogeneity of the disability experience, translation of research to practice, and coordinated research. Funding entities, scientific researchers, and disability communities must begin working with an integrated conceptualization of disability; facilitating diagnostic-specific and cross-disability research; recognizing diversity within the disability population; promoting opportunity, accessibility, and accountability; prioritizing application of research into practice; and coordinating research agendas among funding entities. It concludes with identifying key responsibilities for funding entities, researchers, and disability advocacy organizations and persons with disabilities.

Secondary analysis of a scoping review of health promotion interventions for persons with disabilities: Do health promotion interventions for people with mobility impairments address secondary condition reduction and increased community participation?

BACKGROUND Secondary conditions can have very serious outcomes for people with physical disabilities. Such consequences can range from immobility due to pressure sores to withdrawal and isolation due to depression, decreasing participation in the community. OBJECTIVE/HYPOTHESIS To further investigate these assumptions, we conducted a review of the literature on health promotion interventions that include physical activity for adults with disabilities to determine whether they have a positive effect on the reduction of secondary conditions and increased community participation. METHODS We conducted a secondary analysis of the results of a scoping review of health promotion programs containing physical activity for people with mobility impairments (N = 5). This secondary analysis examined the relationship between health promotion containing physical activity and prevention of secondary conditions among people with various physical disabilities. We further examined evidence and effects of independent variables on the outcome of increased community participation for study participants. RESULTS The outcomes from this investigation are varied, with 2 studies providing evidence of reducing secondary conditions while another shared anecdotal statements referencing a decrease in secondary conditions. Of the remaining 2 studies in this paper, 1 showed no intervention effect on reducing secondary conditions while the remaining study reported an increase in secondary conditions. Regarding increased participation in the community, 2 of 5 studies directly reported on these outcomes, while increased community participation was referenced in another 2 articles, but without any data presented. The final study did not report on any post intervention in the community. CONCLUSIONS This review demonstrates that research on health promotion interventions containing physical activity lack description about whether such interventions help reduce or prevent secondary conditions. Additionally, the review shows that further work is needed in terms of sustaining health programs effects beyond the initial proximal activity gains, with attention given toward more distal outcomes of increased participant participation in the community.

Structure of health-related quality of life among people with and without functional limitations

PurposeThe objective of this study was to assess the factor structure of nine health-related quality of life (HRQOL) survey items among people with and without disabilities or functional limitations (FL) and determine whether factor loadings were similar for the two groups.MethodsData were from US states and territories in the 2001 and 2002 Behavioral Risk Factor Surveillance System (BRFSS). Confirmatory factor analyses assessed fit of the data to a previously found factor structure.ResultsA two-factor structure was confirmed, conceptually representing physical and mental health. Although this structure fit data for both people with and without FL, factor loadings were significantly different for the two groups. In all but one instance, factor loadings were higher for people with FL than for people without FL.ConclusionsResults suggest that people with and without FL conceptualize physical and mental HRQOL similarly. However, the nine items analyzed appear to be a better reflection of the latent constructs of physical and mental HRQOL in the population of people with FL than those without FL.

The Oregon Death with Dignity Act: Results of a literature review and naturalistic inquiry

The Death with Dignity (DWD) Act, a physician-assisted suicide statute, was initially adopted in Oregon In November, 1994 and became operational in 1998. The purpose of this study is to: 1) determine the nature and form of the empirical literature on the Oregon DWD Act; 2) describe the effects of the DWD Act on Oregonians with disabilities according to the empirical literature; and 3) present opinions held by a group of Oregonians with disabilities about the DWD Act and its effects. A literature review and focus group were conducted for this study. Thirteen empirical studies and 11 state annual DWD reports were included in the literature review. Review of the empirical literature on DWD in Oregon reveals a number of potential concerns, including inadequate demographic profiling of DWD requesting patients, inadequate mental health evaluations, insufficient duration of physician-patient relationships, potential inaccuracy of the six month prognosis, and inadequate exploration of alternative treatment. These concerns suggest that the DWD reporting system may be inadequate and lack sufficient safeguards. The focus group revealed that there are multiple facets to the DWD issue. Within the disability community, there does not seem to be unequivocal support for one viewpoint over another.

An Assessment of Web Accessibility Knowledge and Needs at Oregon Community Colleges

A needs assessment determined Oregon community college staff knowledge of (a) accessible information technology (IT) guidelines, (b) IT-related disability laws, (c) legal obligations regarding Web accessibility, and (d) perceived level of current Web accessibility. Training needs were assessed and training suggestions were solicited. IT staff demonstrated higher levels of Web accessibility guidelines knowledge, and disability/student services staff best understood disability laws. At most schools, knowledge of disability issues and IT were not integrated. Needs identified included provision of: comprehensive resources about accessible Web design, hands-on trainings in accessible technology topics, strategies for fulfilling legal accessibility obligations, training for students and staff regarding their responsibilities in the area of accessible IT, and a Web site accessibility testing service.

Development and psychometric assessment of the function-neutral health-related quality of life measure.

ObjectiveThe aim of this study was to determine the conceptual framework, item pool, and psychometric properties of a new function-neutral measure of health-related quality-of-life (HRQOL). DesignThis is an expert panel review of existing measures of HRQOL and development of a conceptual model, core constructs, and item pool and a validation by experts in specific disabilities and in cultural competence. Items were cognitively tested, pilot tested for functional bias, field tested with a national sample of adults with various limitations, and reliability tested via repeat administration. Final item selection was based on analyses of factor structure, demographic bias, variance in likelihood of endorsement, and item-total correlation. Psychometric properties were demonstrated through differential item functioning analyses, factor analyses, correlations, and item response theory analyses. ResultsThe results supported a four-domain conceptual model of HRQOL (physical health, mental health, social health, and life satisfaction and beliefs) for a 42-item HRQOL measure with an ancillary 15-item environment scale. The measure has strong internal consistency (&agr; = 0.88–0.97), known-groups validity, and test-retest reliability (r = 0.83–0.91). Tests of convergent and divergent validity confirmed the ability of the Function-Neutral Health-Related Quality of Life to measure health while being relatively free of content assessing function. ConclusionsA conceptually grounded four-domain, function-neutral measure of HRQOL that is appropriate for use with persons with and without various functional limitations was developed.