Background: While it is commonly accepted that disparities in unmet need for care vary by age, race/ethnicity, income, education, and access to care, literature documenting unmet needs experienced by adults with different types of disabilities is developing.Objective: The main objective was to determine whether subgroups of people with disabilities are more likely than people without disabilities to delay/forgo necessary care, in general and among the insured.Methods: We used pooled Medical Expenditure Panel Survey data (2004-2010) to examine delaying or forgoing medical, dental, and pharmacy care among five disability subgroups (physical, cognitive, visual, hearing, multiple) and the non-disabled population. Logistic regression was conducted to examine delayed/forgone care, controlling for sociodemographic, health, and health care factors.Results: Over 13% of all working-age adults delayed/forwent necessary care; lack of insurance was the strongest predictor of unmet needs. Among the insured, disability subgroups were greater than two times more likely to report delayed/forgone care than adults without disabilities. Insured working-age adults with multiple chronic conditions and those with ADL/IADL assistance needs had higher odds of delayed or forgone care than their peers without these characteristics. Reasons related to affordability were most often listed as leading to unmet needs, regardless of disability.Conclusion: Although insurance status most strongly predicted unmet needs for care, many people with insurance delayed/forewent necessary care. Even among the insured, all disability subgroups had significantly greater likelihood of having to delay/forgo care than those without disabilities. Differences also existed between the disability subgroups. Cost was most frequently cited reason for unmet needs. Published by Elsevier Inc.

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. (C) 2016 Elsevier Inc. All rights reserved.

Background: Surveillance has been insufficient to inform and evaluate public health practices for people with disabilities. No studies have investigated whether there is statistical justification for subdividing the large, heterogeneous group of people with disabilities into subpopulations, for surveillance. Methods: Pooled data from the Medical Expenditures Panel Survey (2004-2010, unweighted n=132,198) included the following disability types: physical, cognitive, visual, hearing loss, and multiple disabilities. We examined differences among the disability subgroups and the no disability group on receipt of flu shot, dental exam, and timely care; insurance status; usual source of care (USOC); mental and physical health; and multiple chronic conditions (MCC). Results: The disability subgroups were sociodemographically heterogeneous and differed from each other and the no disability group on health status (mental, physical, and MCC) and healthcare outcomes (flu shot, dental exam, timely receipt of care, USOC, insurance status). Conclusion: Findings demonstrate that disability subgroups differ in the magnitude of the disparities they experience compared to each other and to people without disabilities. Disability subgroups should be examined separately for public health measures to enable effective tailoring of public health policies and programs to better meet the needs for all people.

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.

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. (C) 2014 Elsevier Inc. All rights reserved.

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 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.

Self-reported health is an important outcome in the evaluation of health care but is largely ignored in favor of proxy-based reporting for people with an intellectual disability. This study briefly reviews the role of self-report in health assessment of people with intellectual disability and the challenges and recommendations that have emerged from the considerable body of research on interviewing and self-report. Limitations in current recommendations are addressed from the perspective of the cognition of self-report. The review describes conceptual directions for the reconciliation of the two contradictory themes in the treatment of self-report: the centrality given to personal perceptions and choices and the methodological concerns over the meaningfulness and validity of the self-reporting process.

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. (C) 2012 Elsevier Inc. All rights reserved.

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. (C) 2011 Elsevier Inc. All rights reserved.

Purpose: Assess extent to which generic Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales include function in assessment of health, and identify health assessment items that are free of functional content. Methods: An expert panel on measurement of health and disability reached consensus on definitions of health, disability, and function. They assessed all items of all generic (non-condition-specific) scales in the 2006 ProQolid database for being important to measuring health as distinct from function. Ratings were summarized as content validity ratios. Retained items were written into standard format and reviewed again by the expert panel and a validity panel with expertise in specific disabilities. Results: Of 85 scales, 21 were retained as containing items important for assessing health. Scales ranged from 100% (BRFSS HRQOL, WHO-5) to only 4% of items rated as important. In further review of "important" items, functional content was identified in many of the items, particularly with regard to mental functioning. Conclusions: Popular generic scales of QOL and HRQOL vary greatly in the degree to which they include content on function. A pool of items can be identified that are relatively free of function. Distinguishing measurement of function and health is particularly important for people with long-standing functional limitations and for assessing the relationship of health with function.

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 seeping 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, I 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. (C) 2011 Published by Elsevier Inc.

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 werw included in the literature review. Review of the empirical literatuer 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.

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.

Conclusion New measures of perceived health status are needed that do not confound function with health.

La rencontre avec la population d’enfants dysphasiques au sein d’un Centre Référent du Langage a alimenté des questionnements concernant notamment l’articulation avec l’organisation de la personnalité et le projet de soins à proposer.Ce travail de recherche propose d’étudier le fonctionnement psychique d’enfants diagnostiqués dysphasiques âgés entre 6 et 11 ans. L’hypothèse centrale est le caractère transnosographique de ce trouble dans le champ de la psychopathologie infantile malgré les critères d’exclusion établis par les classifications française et internationale.La mise à l’épreuve de notre hypothèse s’appuie sur la complémentarité de trois épreuves projectives : Rorschach, C.A.T/T.A.T et Scéno-test, afin d’éclairer les problématiques et aménagements défensifs de ces jeunes patients en dégageant à la fois les traits communs et les aspects plus singuliers. L’analyse du matériel s’est faite dans la perspective psychodynamique.Au sein de notre population de 23 enfants dysphasiques, nous avons regroupé : 11 enfants relevant d’une organisation limite de l’enfance, 7 enfants du registre de la psychose et 5 enfants du registre de l’organisation névrotique.La diversité des registres de fonctionnement de la personnalité repérée au sein de notre échantillon tend à conforter notre hypothèse sur le caractère transnosographique de la dysphasie dans le champ de la psychopathologie infantile.La clinique projective se révèle précieuse aussi pour ces enfants dysphasiques puisque de ce fait leur prise en charge thérapeutique ne se limite pas à la fonction instrumentale et qu’un soin psychique peut être proposé pour nombre d’entre eux.The encounter with a population of dysphasic children in a Language Impairment Centre has raised questions notably regarding the articulation with the organisation of each personality and the project of care to be proposed.This research work proposed to study the mental functioning of children aged 6 to 11 and diagnosed with dysphasia. The central hypothesis was the transnosographic nature of this disorder in the scope of an infantile psychopathology, despite the exclusion criteria established by the French and international classifications.The testing of our hypothesis was based on the complementary nature of three projective tests: the Rorschach, the CAT/TAT and the Sceno-test, in order to shed light on the problems and defensive adjustment of these young patients by underlining the mutual characteristics and the most uncommon aspects. Analysis of the material was conducted in a psychodynamic perspective.Within our population of 23 dysphasic children, we regrouped: 11 having developed borderline personality traits in childhood, 7 children with psychosis and 5 children presenting neurotic personality traits.The diversity of the functioning personality registers discovered in our sample tends to confirm our hypothesis of the transnosographical nature of dysphasia within the infantile psychopathological field.The projecting clinical picture is precious for these dysphasic children, since their therapeutic management is not only limited to the instrumental function, and mental care can be proposed to many of them.