Asthma and asthma-related health care utilization among people without disabilities and people with physical disabilities.

BACKGROUND: Previous research has shown that people with disabilities have higher rates of some chronic diseases and receive poorer disease-specific care than their counterparts without disabilities. Yet, little is known about the relationship between asthma and disability. OBJECTIVE: This study examines whether differences in the prevalence of asthma, asthma flare, and asthma-related measures of health care quality, utilization and cost exist among people with physical limitations (PL) and without any limitations. METHODS: Data from the 2004-2010 Medical Expenditure Panel Survey were pooled to compare outcomes for working-age adults (18-64) with PL to those with no limitations. RESULTS: People with PL had higher rates of asthma (13.8% vs. 5.9%, p < 0.001) and recent asthma flare (52.6% vs. 39.6%, p < 0.001) than people without limitations. There were no differences in health care quality, utilization or cost between people with PL and people without limitations in multivariate analyses. CONCLUSIONS: Although there are no differences in asthma-related quality or utilization of health care, people with PL have poorer asthma control than people without limitations. Research is needed to determine what factors (e.g., focus on other acute ailments, perceptions that asthma control cannot improve) are related to this outcome. Future research must also examine differences in asthma severity, and its impact on asthma control and health care-related outcomes, among people with and without disabilities.

Clinical preventive service use disparities among subgroups of people with disabilities: A scoping review.

BACKGROUND: Recommended use of clinical preventive services (CPS) reduces morbidity and mortality from preventable conditions. Disparities in CPS utilization between individuals with and without disabilities have been shown, but a greater understanding of the disability subpopulations with lowest utilization is needed to better inform research, policy, and practice. OBJECTIVE: The objective was to conduct a scoping review of the literature to identify relevant studies on disparities in receipt of CPS among subgroups of individuals with disabilities. METHODS: In July 2010, electronic and manual literature searches were conducted for years 2000-2009. Review for inclusion/exclusion and data analysis occurred in 2010 and 2011. In 2012, the review was updated to cover abstracts published in 2010 and 2011. Identified abstracts, and then full-text articles of included abstracts, were reviewed according to inclusion/exclusion criteria by multiple reviewers. For articles meeting all criteria, two reviewers performed independent data extraction. A gap analysis was performed to identify areas of concentration and gaps in the literature. RESULTS: Twenty-seven articles met inclusion criteria for this review. Studies varied substantially in sample composition and research methods. CPS examined most often were cervical cancer screening (14 studies) and mammography (13 studies). Potential disparity factors studied most often were disability factors (i.e., disabling condition in 12 studies, disability severity in 10 studies). Stratification of CPS by disparity factors revealed substantial gaps in the literature. CONCLUSIONS: The literature gaps point to a need for high quality research on access disparities among subgroups of individuals with disabilities.

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

OBJECTIVE: The 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). DESIGN: This 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. RESULTS: The 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 (α = 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. CONCLUSIONS: A conceptually grounded four-domain, function-neutral measure of HRQOL that is appropriate for use with persons with and without various functional limitations was developed.

Construction and validation of the Outpatient Health Care Usability Profile (OHCUP).

BACKGROUND: The Americans with Disabilities Act (ADA) requires health care facilities to provide equal access to patents with disabilities. Yet, people with disabilities experience many access barriers. OBJECTIVE/HYPOTHESIS: To develop a valid, reliable, and user-friendly tool that measures the physical and environmental features of outpatient health care facilities. Instead of addressing full compliance with the ADA, the tool measures the essential features of an outpatient health care facility. METHODS: The project included an online survey of people with disabilities (reported elsewhere), work groups of people with disabilities prioritizing ADA administrative guidelines (ADAAG), ADA expert review, measure development, pilot testing and re-testing. ADA experts' ratings were summarized as Content Validity Ratios (CVR). Retained ADAAG items were organized into a survey instrument and tested by raters at outpatient health clinics. Inter-rater reliability was assessed using Cohen's Kappa coefficient and Gwet's AC1 statistic. Refinement and re-testing of the instrument was conducted. RESULTS: The work groups narrowed the ADAG items from over 400 to 154 items. CVR ratings from ADA subject-matter experts reduced the items to 129. Inter-rater reliability for the pilot version was 0.61 (Kappa) and 0.88 (AC1). After refinement, inter-rater reliability was 0.77 (Kappa) and 0.90 (AC1). The items with the lowest reliability scores were re-examined, revised, and re-tested. Inter-rater reliability for the final version of the OHCUP was 0.89 (Kappa) and 0.97 (AC1). CONCLUSIONS: The OHCUP is a valid and reliable tool for measuring the usability of health care facilities.

A randomized trial of a health promotion intervention for adults with disabilities.

BACKGROUND: People with disabilities face a range of health disparities, including increased risk for preventable health problems. Thus, health promotion efforts addressing the reduction of risk factors are especially important for this population. OBJECTIVE: This study examined changes in health behaviors among adults with disabilities following participation in the Healthy Lifestyles for People with Disabilities health promotion program. It was hypothesized that intervention participants would demonstrate significant increases in healthy behaviors in areas such as health responsibility, physical activity, nutrition, stress management, interpersonal relationships, and spiritual growth while controls would not show significant change. METHODS: Participants (n = 95) were randomly assigned to the intervention or to a wait-list. After initially serving as controls, wait-list members later received the intervention as well. A measure of health behaviors was completed at baseline, 4 months, 7 months, and 10 months. RESULTS: Health behavior scores of immediate intervention participants increased significantly (p <.001) while the scores of wait-list members showed no significant change. After subsequently attending a Healthy Lifestyles workshop, scores of wait-list participants also increased significantly (p = .001). CONCLUSIONS: The Healthy Lifestyles intervention appears to be successful in helping adults with disabilities increase healthy behaviors.

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.

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.

Translating policy principles into practice to improve health care access for adults with intellectual disabilities: a research review of the past decade.

This article extracts principles from two Surgeon General reports, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation (2002) and Call to Action to Improve the Health and Wellness of Persons with Disabilities (2005), and combines them with the Objectives from Chapter 6 of Healthy People 2010 to create a policy framework. This framework is used to review literature from the past decade on access to health care and health promotion for persons with intellectual and developmental disabilities (IDD). Review of the literature indicates an emerging evidence base for health promotion programs for persons with IDD. Research in health care and health promotion access requires improvements in surveillance and measurement of quality of life, as well as increased participation of persons with IDD and their families in its implementation. While international guidelines for primary health care have been developed for people with IDD, US guidelines are specialty focused and address specific conditions. Despite its recognized importance, there is surprisingly little information on training programs for health care providers to improve care of persons with IDD. Financing of health care continues to threaten access to comprehensive care for persons with IDD, particularly regarding coordination of care and availability of providers who accept Medicaid patients. Community-based sources of health care have been slow to emerge, and there is clear need for assumption of responsibility for providing care to persons with IDD. Future US policy should include consideration of environmental factors in health care access.