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.

GRAIDs: a framework for closing the gap in the availability of health promotion programs and interventions for people with disabilities.

BACKGROUND: Evidence-based health promotion programs developed and tested in the general population typically exclude people with disabilities. To address this gap, a set of methods and criteria were created to adapt evidence-based health promotion programs for people with disabilities. In this first study, we describe a framework for adapting evidence-based obesity prevention strategies for people with disabilities. We illustrate how the framework has been used to adapt the U.S. Centers for Disease Control and Prevention's (CDC) obesity prevention strategies for individuals with physical and developmental disabilities. METHODS: The development of inclusion guidelines, recommendations and adaptations for obesity prevention (referred to as GRAIDs--Guidelines, Recommendations, Adaptations Including Disability) consists of five components: (i) a scoping review of the published and grey literature; (ii) an expert workgroup composed of nationally recognized leaders in disability and health promotion who review, discuss and modify the scoping review materials and develop the content into draft GRAIDs; (iii) focus groups with individuals with disabilities and their family members (conducted separately) who provide input on the potential applicability of the proposed GRAIDs in real world settings; (iv) a national consensus meeting with 21 expert panel members who review and vote on a final set of GRAIDs; and (v) an independent peer review of GRAIDs by national leaders from key disability organizations and professional groups through an online web portal. RESULTS: This is an ongoing project, and to date, the process has been used to develop 11 GRAIDs to coincide with 11 of the 24 CDC obesity prevention strategies. CONCLUSION: A set of methods and criteria have been developed to allow researchers, practitioners and government agencies to promote inclusive health promotion guidelines, strategies and practices for people with disabilities. Evidence-based programs developed for people without disabilities can now be adapted for people with disabilities using the GRAIDs framework.

The dynamics of disability and chronic conditions.

The purpose of this paper is to provide a background to chronic conditions and disability and introduce manuscripts that were part of a recent forum examining this issue. The paper begins with an overview of definitions of disability and chronic conditions. It then presents several reasons why disentangling chronic conditions and disability is important. Finally, it briefly describes the forum manuscripts before making a call for understanding the dynamics of chronic condition and disability to promote the health of all.

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.

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.

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.

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

PURPOSE: The 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. METHODS: Data 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. RESULTS: A 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. CONCLUSIONS: Results 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.

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.

Prevalence of maltreatment of people with intellectual disabilities: a review of recently published research.

Maltreatment can have a profound adverse effect on the health of individuals with intellectual disabilities (ID). People with ID may also be more likely to experience maltreatment than other groups. Historically, data on prevalence of maltreatment among people with ID have been sparse and methodologically weak but have suggested that the scope of the problem is considerable. Studies published between 1995 and 2005 were reviewed to determine estimated maltreatment prevalence among people with ID based on recent literature. Prevalence estimates for people with ID were compared to estimates for people with no disabilities and people with other types of disabilities. Only five studies provided maltreatment prevalence estimates for people with ID. The limited data suggest that maltreatment is more prevalent for people with ID than for people with no disabilities and may be higher for people with ID than for people with certain other disabilities. Most of the available research is still based on convenience samples. More population-level data are needed to provide reliable estimates of the prevalence of this important health problem.