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Background: For over 50 years, federal disability civil rights laws have mandated that patients with disability receive equitable health care. However, disabled patients continue to experience health care disparities., Objective: To explore physicians' views, in their own words, about caring for patients with disability., Methods: Review of responses to open-ended question at the end of a nationally representative survey of 714 outpatient physicians about their experiences caring for adult disabled patients. The open-ended question asked for additional comments participants wanted to share. Only 108 (15.1 %) survey participants provided responses suitable for analysis (e.g., legible, complete thought). All issues reported here reflect comments from ≥5 participants., Results: Common concerns involved high costs, too little time, insufficient space, inadequate training, and lack of adequate mental health services to care for disabled patients. Many physicians appeared frustrated by legal requirements that they cover accommodation costs. Multiple physicians described as "unfair" having to pay for sign language interpreters, especially since interpreter costs generally exceed reimbursements for patients' visits. Physicians also commented on high costs and space demands of accessible exam tables, especially for small practices, and on challenges accommodating patients with severe obesity, including concerns that patients with severe obesity could damage their exam tables. Some participants suggested that disabled patients require advocates to get good quality care., Conclusions: Albeit limited by the small number of responses, these open-ended comments from our nationwide survey of physicians suggest some doctors view certain accessibility requirements as unfair to them or infeasible in their practice environments., Competing Interests: Declaration of competing interest None., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: More than seven million people with intellectual and/or developmental disabilities (ID/DD) live in the US and may face an elevated risk for COVID-19., Objective: To identify correlates of COVID-19 and related hospitalizations among people with ID/DD in group homes in Massachusetts., Methods: We collected data during March 1, 2020-June 30, 2020 (wave 1) and July 1, 2020-March 31, 2021 (wave 2) from the Massachusetts Department of Public Health and six organizations administering 206 group homes for 1035 residents with ID/DD. The main outcomes were COVID-19 infections and related hospitalizations. We fit multilevel Cox proportional hazards models to estimate associations with observed predictors and assess contextual home- and organizational-level effects., Results: Compared with Massachusetts residents, group home residents had a higher age-adjusted rate of COVID-19 in wave 1 (incidence rate ratio [IRR], 12.06; 95 % confidence interval [CI], 10.51-13.84) and wave 2 (IRR, 2.47; 95 % CI, 2.12-2.88) and a higher age-adjusted rate of COVID-19 hospitalizations in wave 1 (IRR, 17.64; 95 % CI, 12.59-24.70) and wave 2 (IRR, 4.95; 95 % CI, 3.23-7.60). COVID-19 infections and hospitalizations were more likely among residents aged 65+ and in group homes with 6+ resident beds and recent infection among staff and residents., Conclusions: Aggressive efforts to decrease resident density, staff-to-resident ratios, and staff infections through efforts such as vaccination, in addition to ongoing access to personal protective equipment and COVID-19 testing, may reduce COVID-19 and related hospitalizations in people with ID/DD living in group homes., Competing Interests: Declaration of competing interest Dr. Levison is a medical advisor to eMED, LLC. Dr. Tsai receives a financial honorarium from Elsevier, Inc. for his work as Co-Editor in Chief of the Elsevier-owned journal SSM-Mental Health. Dr. Donelan is an unpaid board member of Bridges Associates Inc, a non-profit organization serving persons with intellectual and developmental disabilities. Dr. Becker is a current recipient of the American Academy of Child and Adolescent Psychiatry (AACAP) Junior Investigator Award supported by AACAP and Industry Sponsors (Sunovion Pharmaceuticals, Inc. and Supernus Pharmaceuticals, Inc.). Dr. Skotko occasionally consults on the topic of Down syndrome through Gerson Lehrman Group. He receives remuneration from Down syndrome non-profit organizations for speaking engagements and associated travel expenses. In the past two years, Dr. Skotko received annual royalties from Woodbine House, Inc., for the publication of his book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. Within the past two years, he has received research funding from F. Hoffmann-La Roche, Inc., AC Immune, and LuMind Research Down Syndrome Foundation to conduct clinical trials for people with Down syndrome. Dr. Skotko is occasionally asked to serve as an expert witness for legal cases where Down syndrome is discussed. Dr. Skotko serves in a non-paid capacity on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources. Dr. Skotko has a sister with Down syndrome., (Copyright © 2024. Published by Elsevier Inc.)

Background: People with serious mental illness (SMI) and intellectual disabilities and/or developmental disabilities (ID/DD) living in group homes (GHs) and residential staff are at higher risk for COVID-19 infection, hospitalization, and death compared with the general population., Methods: We describe a hybrid type 1 effectiveness-implementation cluster randomized trial to assess evidence-based infection prevention practices to prevent COVID-19 for residents with SMI or ID/DD and the staff in GHs. The trial will use a cluster randomized design in 400 state-funded GHs in Massachusetts for adults with SMI or ID/DD to compare effectiveness and implementation of "Tailored Best Practices" (TBP) consisting of evidence-based COVID-19 infection prevention practices adapted for residents with SMI and ID/DD and GH staff; to "General Best Practices" (GBP), consisting of required standard of care reflecting state and federal standard general guidelines for COVID-19 prevention in GHs. External (i.e., community-based research staff) and internal (i.e., GH staff leadership) personnel will facilitate implementation of TBP. The primary effectiveness outcome is incident SARS-CoV-2 infection and secondary effectiveness outcomes include COVID-19-related hospitalizations and mortality in GHs. The primary implementation outcomes are fidelity to TBP and rates of COVID-19 vaccination. Secondary implementation outcomes are adoption, adaptation, reach, and maintenance. Outcomes will be assessed at baseline, 3-, 6-, 9-, 12-, and 15-months post-randomization., Conclusions: This study will advance knowledge on comparative effectiveness and implementation of two different strategies to prevent COVID-19-related infection, morbidity, and mortality and promote fidelity and adoption of these interventions in high-risk GHs for residents with SMI or ID/DD and staff., Clinical Trial Registration Number: NCT04726371., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Dr. Skotko occasionally consults on the topic of Down syndrome through Gerson Lehrman Group. He receives remuneration from Down syndrome non-profit organizations for speaking engagements and associated travel expenses. Dr. Skotko receives annual royalties from Woodbine House, Inc., for the publication of his book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. Within the past two years, he has received research funding from F. Hoffmann-La Roche, Inc., AC Immune, and LuMind Research Down Syndrome Foundation to conduct clinical trials for people with Down syndrome. Dr. Skotko is occasionally asked to serve as an expert witness for legal cases where Down syndrome is discussed. Dr. Skotko serves in a non-paid capacity on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress and the Professional Advisory Committee for the National Center for Prenatal and Postnatal Down Syndrome Resources. Dr. Skotko has a sister with Down syndrome., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background: Approximately 16.2 million Americans ages 18 and older (5.7%) report being deaf or having serious difficulty hearing. Hearing loss impedes effective communication during clinical encounters putting patients' safety at risk. A large fraction of Americans with Disabilities Act lawsuits addresses whether providers offered auxiliary aids and services required to ensure effective communication., Objective: Examine use of different hearing accommodations for deaf or hard of hearing patients by U.S. physicians., Methods: We surveyed randomly selected physicians nationwide representing 7 specialties about their reported use of 8 types of accommodations when communicating with adult outpatients who are deaf or have significant difficulty hearing, even with hearing aids (overall weighted response rate = 61.0%). We performed a descriptive analysis of responses, using survey sampling weights., Results: Among the 526 physicians in this analysis, most were male, white, urban, and practiced in community-based practices. Overall, 81.5% (SE = 1.9) reported that patients with significant hearing limitations get worse quality health care than others. Among participants, 49.8% (2.4) reported never using an in-person sign language interpreter hired by the practice, and 63.2% (2.4) never use video remote interpreting. In contrast, 30.7% (2.1) always and 29.8% (2.2) usually speak louder and slower to patients with significant hearing limitations. None of the 8 accommodations were always or usually used by 8.9% (1.3) of participants., Conclusions: More than 32 years after the Americans with Disabilities Act, most physicians do not offer accommodations sufficient to ensure effective communication with adult outpatients with significant hearing limitations., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background: Mobility limitations are the most common disability type among the 61 million Americans with disability. Studies of patients with mobility limitations suggest that inaccessible medical diagnostic equipment poses significant barriers to care., Methods: The study team surveyed randomly selected US physicians nationwide representing seven specialties about their reported use of accessible weight scales and exam tables/chairs when caring for patients with mobility limitations. A descriptive analysis of responses was performed, and multivariable logistic regression was used to examine associations between accessible equipment and participants' characteristics., Results: The 714 participants (survey response rate = 61.0%) were primarily male, White, and urban, and had practiced for 20 or more years. Among those reporting routinely recording patients' weights (n = 399), only 22.6% (standard error [SE] = 2.2) reported always or usually using accessible weight scales for patients with significant mobility limitations. To determine weights of patients with mobility limitations, 8.1% always, 24.3% usually, and 40.0% sometimes asked patients. Physicians practicing ≥ 20 years were much less likely than other physicians to use accessible weight scales: odds ratio (OR) = 0.51 (95% confidence interval [CI] = 0.26-0.99). Among participants seeing patients with significant mobility limitations (n = 584), only 40.3% (SE = 2.2) always or usually used accessible exam tables or chairs. Specialists were much more likely than primary care physicians to use accessible exam tables/chairs: OR = 1.96 (95% CI = 1.29-2.99)., Conclusion: More than 30 years after enactment of the Americans with Disabilities Act, most physicians surveyed do not use accessible equipment for routine care of patients with chronic significant mobility limitations., (Copyright © 2021 The Joint Commission. Published by Elsevier Inc. All rights reserved.)

Background: Given the growing population of U.S. adults with obesity and mobility disability, physicians will need to accommodate these patients., Objective: To explore attitudes and practices of US physicians related to caring for patients with obesity and mobility disability., Methods: Three open-ended, semi-structured, web-based focus group interviews with practicing physicians in selected specialties, which reached data saturation. Interviews were video recorded and transcribed for qualitative, conventional content analysis. Measurements included commonly expressed themes around caring for patients with obesity., Results: Physicians recognized obesity as a disability that poses challenges to high quality, safe, and efficient patient care. Observations coalesced around four themes: (1) difficulty routinely tracking weight; (2) reluctance to transfer obese patients to exam tables; (3) barriers to diagnostic testing; and (4) weight stigma. Physicians described difficulties accurately assessing weight, performing complete physical examinations, arranging diagnostic imaging, and providing prenatal care for obese patients. Lack of accessible medical diagnostic equipment impeded care for patients with obesity. Other participants did not contest comments of individual participants' that suggested weight stigma., Conclusions: Our findings suggest that important gaps may remain in providing equitable access to care for patients with obesity, requiring additional training and accessible medical diagnostic equipment to safely accommodate these patients., Competing Interests: Declaration of competing interest The authors declared no conflict of interest., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: The 21st Century Cures Act, enacted in 2016, mandates that Medicaid programs must implement Electronic Visit Verification (EVV) for home-based personal assistance services (PAS) and home health care (HHC) by January 2020. EVV involves real-time tracking of arrival and departure times, locations, and sometimes activities of PAS and HHC workers for home-based consumers., Objective: We examined the views and perceptions of consumers with disability and paid PAS workers about EVV., Methods: Our qualitative study consisted of in-depth interviews with 21 home-based PAS consumers with significant disability and 20 PAS workers. Thirteen consumers and 10 workers commented on EVV. We audio-recorded interviews and had these recordings transcribed verbatim by a professional transcription service. We used conventional content analysis to identify key themes from the interviews., Results: Qualitative interviews suggest that EVV is intrusive, reduces flexibility from the consumer-worker relationship, has technical difficulties, but may help certain consumers. Our results suggest that EVV interferes with the standard way PAS is provided and raises fears about EVV negatively affecting recruitment and retention of PAS workers., Conclusions: Policymakers should consider these perspectives and concerns as states implement EVV. Policymakers will need to monitor the effects of EVV on both PAS consumers and workers over time to ensure that EVV is not negatively affecting provision of these essential services., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: Many factors contribute to the well-recognized health care disparities experienced by persons with disability, including failure of physicians to understand the lives of individuals with disability. Disability cultural competence considers physicians' ability to meet the social, cultural, and linguistic needs of this population., Objectives: To assess physicians' understanding of disability cultural competence and attitudes towards patients with disability., Methods: Qualitative analyses of open-ended individual interviews averaging 41 min with 20 Massachusetts physicians from 5 different subspecialties, in practice for 8-51 years. Interview recordings were transcribed verbatim for conventional content analysis., Results: Most participants defined disability using medically-focused concepts rather than concepts that recognize how social factors contribute to disability. All participants used disability culturally-competent language, such as "person-first language," at some points throughout their interviews. However, most participants also employed language that is now considered unacceptable or archaic, such as variations on the word "handicap," "wheelchair-bound," describing persons with disability as "suffering," and calling persons by their health condition (e.g., "COPDer"). Participants mentioned persons with mental illness and intellectual disability as particularly challenging, especially around communication and performing even routine tests or examinations. Recommendations for improving care included better listening to patients with disability and seeking their views about their care., Conclusions: In this exploratory study, most participants used language that is considered disability culturally competent at times but also employed many terms and concepts that are considered outdated and may be troubling to some persons with disability., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Despite limitations in their clinical content, claims data from administering health plans can provide important insights about service use and outcomes across large populations. However, using claims data to investigate care and outcomes among persons with disability is challenging because standard diagnosis, procedure, and medication codes provide little information about functional impairments or disability., Objective: To explore whether supportive services claims provide useful information for predicting health care outcomes among persons with chronic disease and disability., Methods: We used administrative data from a nonprofit, Massachusetts health plan, including members who were 21 years of age and older and dually-eligible for Medicare and Medicaid. With procedure codes, we identified long-term services and supports and ventilator and percutaneous endoscopic gastrostomy supplies. Data from calendar year 2015 were used to predict deaths and hospitalizations in 2016. Hazards ratio analyses predicted these outcomes adjusting for age, sex, disease burden, and amount of personal assistance and homemaker services used (proxy functional status measure)., Results: In bivariate analyses, all four predictors were statistically significant for both outcomes. In the full model, the proxy functional status measure did not statistically significantly predict hospitalization or death. After eliminating disease burden from the model, the proxy functional status measure became statistically significant, with hazards ratios of 1.006 for hospitalization (p = 0.0011) and 1.014 (p = <0.0001) for death., Conclusions: Claims for supportive services could be proxies for disability in analyses using administrative data, but additional research must demonstrate their usefulness for predicting health care outcomes., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Persons leading their own evaluations of care quality offers the promise of generating maximally meaningful information to ensure person-centered care., Objectives: To describe an intervention where persons with disability engage other persons with disability, develop their own metrics to assess their care, and provide these care evaluations directly to primary care practitioners, with the goal of improving care. The context was a research study involving One Care, a Massachusetts demonstration program with capitated reimbursement for individuals ages 18-64 dually eligible for Medicare and Medicaid., Methods: Individuals with serious mental illness or significant physical disability designed and implemented "YESHealth: Your Experience, Speak up for better health care." To solicit and communicate with YESHealth members, they mailed postcards announcing YESHealth to potential participants, created a website, sponsored a Facebook group, and staffed telephones in English and Spanish. YESHealth also involved reaching out to numerous disability advocacy organizations, developing and conducting short quarterly surveys about quality concerns they identified, and reporting survey results to YESHealth members and their primary care practitioners., Results: Over 12 months, YESHealth staff visited 60 community organizations to recruit participants. Recruiting participants was challenging and ultimately required offering monetary compensation. Participants preferred telephone to online communication. Efforts to engage targeted primary care practitioners had very limited success., Conclusions: Despite these challenges, YESHealth represents a unique model for consumers' voices to try to affect change in care delivery. A randomized trial has evaluated whether the YESHealth intervention affected care quality for One Care members with disability., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: In October 2013, Massachusetts initiated the One Care demonstration, which enrolls beneficiaries ages 21 to 64 dually-eligible for Medicare and Medicaid. Local disability advocates argued that persons with disability should assess their own One Care quality., Objectives: To test the comparative effectiveness for improving patient-reported health care experiences of two informational interventions in a 12-month period: (1) "YESHealth: Your Experience, Speak up for better health care," in which disability advocates developed brief topical surveys and gathered information from One Care enrollees with significant physical disability or serious mental illness; and (2) the Persons with Disability Quality Survey (PDQ-S), developed collaboratively with persons with disability., Methods: This cluster randomized controlled trial randomly assigned 27 primary care practices with ≥50 One Care members to three study arms differing by information provided to practice directors and primary care providers (PCPs): (1) quarterly YESHealth reports plus results from baseline administration of PDQ-S to 720 enrollees before YESHealth implementation; (2) PDQ-S results only; and (3) no study information. We administered PDQ-S again one year later and used difference-in-differences analyses of results across the two years to assess intervention outcomes., Results: Disability advocates conducting YESHealth reported substantial difficulties contacting practices and engaging PCPs. With few exceptions, no differences were found across the three study arms in enrollee-reported outcomes., Conclusions: Providing consumer-designed and generated quality information to PCPs had no measurable effect on enrollees' perceptions of One Care quality. Barriers to PCPs engaging with disability advocates could have contributed to YESHealth's failure to improve care., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: Few U.S. studies have explored how children experience a parent's mobility disability and its effects on their daily lives., Objective: We aimed to engage youth ages 13-17 who had at least one parent with mobility disability in describing their perceptions of their parent's disability and its consequences for their daily and family life., Methods: Participants videoed and photographed their experiences following general guidelines from the researchers about topics of interest. Participants made their own choices about what they submitted. We used conventional content analysis to identify broad themes., Results: The mean (standard deviation) age of the 10 participants was 15.2 (1.9) years; 5 were male; 9 participants were white. All 5 girls submitted multiple self-focused (selfie) videos made in their bedrooms; the 5 boys submitted more diverse data files. Several broad themes or topics emerged including: the effects of timing and trajectory of the parent's disability; perceptions of early maturity and responsibility; fears and frustrations relating to the parent's disability; support and emerging resilience; and sense of social justice. Participants generally felt their parents' disability made them become - compared to their peers - more mature, responsible, capable of performing household tasks, and aware of disability civil rights., Conclusions: Participants raised many issues that health care providers should be aware of when youth have parents with mobility disability. A parent's mobility disability may be associated with resilience but also may pose challenges for youth. More research is needed to understand better adolescents' experiences and how clinicians might best assist these youth., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: Women with physical disabilities (WPD) experience major barriers to care during pregnancy. Lack of education about disability in health professionals' education is a pervasive barrier to quality care. In an effort to explore this issue, this study examined the issue from the perspective of obstetric clinicians who provide care to WPD., Objective: This qualitative descriptive study explored perspectives of obstetric clinicians who provide perinatal care for WPD to inform the educational preparation of clinicians to care for women with disabilities., Method: We contacted 33 obstetric clinicians who care for pregnant WPD. Thirteen obstetricians and one nurse midwife participated in semi-structured telephone interviews. Interview transcriptions were content analyzed to identify initial themes. Investigators discussed and revised the themes as additional transcripts were reviewed and new themes were identified., Results: Themes identified from transcript analyses included: lack of education at any level including during postgraduate residency and fellowship on care of pregnant WPD, unplanned career pathway, educating other clinicians, and positive and negative experiences providing obstetrical care to women with physical disability. Several clinicians provided this care because of requests from other clinicians and did not begin their careers with the goal of providing obstetric care to women with physical disabilities. None had received formal education or training including during their residencies or fellowships. The clinicians described very rewarding experiences caring for WPD., Conclusions: The experiences reported by this study's participants suggest the need to include disability in undergraduate and postgraduate education and training to improve obstetric care to WPD., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Women with physical disabilities are known to experience disparities in maternity care access and quality, and communication gaps with maternity care providers, however there is little research exploring the maternity care experiences of women with physical disabilities from the perspective of their health care practitioners., Objective: This study explored health care practitioners' experiences and needs around providing perinatal care to women with physical disabilities in order to identify potential drivers of these disparities., Methods: We conducted semi-structured telephone interviews with 14 health care practitioners in the United States who provide maternity care to women with physical disabilities, as identified by affiliation with disability-related organizations, publications and snowball sampling. Descriptive coding and content analysis techniques were used to develop an iterative code book related to barriers to caring for this population. Public health theory regarding levels of barriers was applied to generate broad barrier categories, which were then analyzed using content analysis., Results: Participant-reported barriers to providing optimal maternity care to women with physical disabilities were grouped into four levels: practitioner level (e.g., unwillingness to provide care), clinical practice level (e.g., accessible office equipment like adjustable exam tables), system level (e.g., time limits, reimbursement policies), and barriers relating to lack of scientific evidence (e.g., lack of disability-specific clinical data)., Conclusion: Participants endorsed barriers to providing optimal maternity care to women with physical disabilities. Our findings highlight the needs for maternity care practice guidelines for women with physical disabilities, and for training and education regarding the maternity care needs of this population., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Childbirth is widely acknowledged as one of the most painful experiences most women will undergo in their lifetimes. Alleviating labor and delivery pain for women with physical disabilities can involve an additional level of complexity beyond that experienced by most women, but little research has explored their experiences., Objective: The purpose of this study was to explore the experiences of women with physical disabilities with respect to pain relief during labor and delivery with the goal of informing their care., Methods: Data were collected using semi-structured interviews with twenty-five women with physical disabilities from across the United States., Results: Women expressed specific preferences for the method of pain relief. Some confronted systemic barriers in exploring their options for pain relief, while others were given a choice. At times, anesthesiologists lacked knowledge and experience in caring for women with disabilities. Conversely, some women described how the administration of anesthesia was meticulously planned and attributed their positive labor and delivery experiences to this careful planning., Conclusions: Advanced, individualized planning and evaluation of their options for pain relief was most satisfying to women and enabled them to make an informed choice. This approach is consistent with the recommendations of clinicians who have successfully provided pain relief during labor to women with complex physical disabilities. Clinicians who have successfully delivered babies of women with these and similar disabilities emphasize the importance of a team approach where the anesthesiologist and other specialists are involved early on in a woman's care., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Demonstration programs nationwide aim to control costs and improve care for people dually-eligible for Medicare and Medicaid, including many persons with disability. Ensuring these initiatives maintain or improve care quality requires comprehensive evaluation of quality of care., Objectives: To examine whether the common quality measures being used to evaluate the Massachusetts One Care duals demonstration program comprehensively address the concerns of persons with disability., Methods: Drawing upon existing conceptual frameworks, we developed a model of interrelationships of personal, health care, and environmental factors for achieving wellness for persons with disability. Based on this model, we specified a scheme to code individual quality measurement items and coded the items contained in 12 measures being used to assess Massachusetts One Care, which exclusively enrolls non-elderly adults with disability., Results: Across these 12 measures, we assigned 376 codes to 302 items; some items received two codes. Taken together, the 12 measures contain items addressing most factors in our conceptual model that affect health care quality for persons with disability, including long-term services and supports. Some important gaps exist. No items examine sexual or reproductive health care, peer support, housing security, disability stigmatization, and specific services obtained outside the home like adult day care. Certain key concepts are covered only by a single or several of the 12 quality measures., Conclusions: Common quality metrics cover most - although not all-health care quality concerns of persons with disability. However, multiple different quality measures are required for this comprehensive coverage, raising questions about respondent burden., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: When assessing results of health care delivery system reforms targeting persons with disability, quality metrics must reflect the experiences and perspectives of this population., Objective: For persons with disability and researchers to develop collaboratively a survey that addresses critical quality questions about a new Massachusetts health care program for persons with disability dually-eligible for Medicare and Medicaid., Methods: Persons with significant physical disability or serious mental health diagnoses participated fully in all research activities, including co-directing the study, co-moderating focus groups, performing qualitative analyses, specifying survey topics, cognitive interviewing, and refining survey language. Several sources informed survey development, including key informant interviews, focus groups, and cognitive testing., Results: We interviewed 18 key informants from key stakeholder groups, including disability advocates, health care providers, and governmental agencies. We conducted 12 total English- and Spanish-language focus groups involving 87 participants (38 with physical disability, 49 with mental health diagnoses). Although some details differed, focus group findings were similar across the two disability groups. Analyses by collaborators with disability identified 29 questions for persons with physical disability and 38 for persons with mental health diagnoses. After cognitive testing, the final survey includes questions on topics ranging from independent living principles to health care delivery system concerns., Conclusions: The Persons with Disabilities Quality Survey (PDQ-S) captures specific quality concerns of Massachusetts residents with physical or mental health disability about an integrated health plan. PDQ-S requires further testing elsewhere to determine its value for quality assessment more generally and to other populations with disability., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Objective: To explore the perinatal experiences of women with physical disabilities (WWPD) and their associated recommendations for maternity care clinicians to improve care., Design: A mixed-methods study was conducted with a semistructured interview guide to identify the experiences of WWPD. This qualitative descriptive study was part of a larger study of the unmet needs and barriers to perinatal care experienced by WWPD SETTING: Telephone interview., Participants: Twenty-five women with physical disabilities who gave birth within the last 10 years and were 21 to 55 years of age were recruited and agreed to participate in the study., Methods: Participants were asked about their interactions with clinicians during pregnancy and their recommendations for clinicians to improve perinatal care for women with physical disabilities. Content analysis was used to analyze transcribed interviews. Themes that emerged from analysis of the interviews were identified and coded. Kurasaski's coding was used to establish the reliability of the coding., Results: Three themes emerged from analysis of the interview data: Clinicians' lack of knowledge about pregnancy-related needs of WWPD; Clinicians' failure to consider women's knowledge, experience, and expertise about their own disabilities; and Clinicians' lack of awareness of the reproductive concerns of WWPD. Women provided recommendations that warrant attention from clinicians who provide perinatal care for women who live with physical disabilities., Conclusion: Participants experienced problematic interactions with clinicians related to pregnancy and identified recommendations for maternity care clinicians to address those problems with the goal of improving perinatal health care for WWPD., Competing Interests: The authors report no conflict of interest or relevant financial relationships., (Published by Elsevier Inc.)

Background: Persons with disabilities have often experienced disparities in routine cancer screening. However, with civil rights protections from the 1990 Americans with Disabilities Act, such disparities may diminish over time., Objective: To examine whether disability disparities exist for colorectal cancer screening and whether these screening patterns have changed over time., Methods: We analyzed National Health Interview Survey responses from civilian, non-institutionalized U.S. residents 50-75 years old from selected years between 1998 and 2010. We specified 7 chronic disability indicators using self-reported functional impairments, activity/participation limitations, and expected duration. Separately for women and men, we conducted bivariable and multivariable logistic regression analyses examining associations of self-reported colorectal cancer screening services with sociodemographic factors and disability type., Results: Patterns of chronic disability differed somewhat between women and men; disability rates generally rose over time. For both women and men, colorectal cancer screening rates increased substantially from 1998 through 2010. Over time, relatively few statistically significant differences were reported in colorectal cancer screening rates between nondisabled persons and individuals with various disabilities. In 2010, reported screening rates were generally comparable between nondisabled and disabled persons. In the few statistically significant differences, persons with disabilities almost always reported higher colorectal cancer screening rates than nondisabled individuals., Conclusions: According to national survey data, reported use of colorectal cancer screening is similar between nondisabled persons and individuals with a variety of different disability types. Despite physical demands of some colorectal cancer screening tests, disparities do not appear between populations with and without disability., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Despite concerns raised in the literature on the adverse pregnancy outcomes of women with physical disabilities, there is little information about unmet needs of women with physical disabilities during pregnancy and childbirth., Objective: This article provides an in-depth examination of unmet health care needs during and around the time of pregnancy among a sample of women with physical disabilities. It also offers recommendations to other women with physical disabilities who are considering pregnancy., Methods: Twenty-five phone interviews were conducted with women with physical disabilities from across the United States who had a baby in the past ten years. Individual semi-structured qualitative interviews lasting about 2 h were conducted. Interviews were audio-recorded, transcribed, and analyzed using an iterative, interpretive process., Results: Women reported a wide range of disabling conditions. Analysis revealed three broad themes related to unmet needs during pregnancy among women with physical disabilities. They included (1) clinician knowledge and attitudes, (2) physical accessibility of health care facilities and equipment, (3) need for information related to pregnancy and postpartum supports. The women also provided recommendations to other women with disabilities who are currently pregnant or thinking of becoming pregnant. Recommendations related to finding a clinician one trusts, seeking peer support, self-advocating, and preparing oneself for the baby., Conclusions: This study sheds light on the unmet needs and barriers to care of women with mobility disabilities during pregnancy and childbirth. The study findings highlight the need for policy and practice recommendations for perinatal care of women with mobility disabilities., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Caregiving roles of children <18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability., Objective: To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving., Methods: We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ≥21 years who as children (age < 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes., Results: Interviewees' mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children's care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions., Conclusions: Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Studies suggest that women with disabilities experience health and health care disparities before, during, and after pregnancy. However, existing perinatal health and health care frameworks do not address the needs and barriers faced by women with physical disabilities around the time of pregnancy. A new framework that addresses perinatal disparities among women with physical disabilities is needed., Objective: To propose a framework for examining perinatal health and health care disparities among women with physical disabilities., Methods: We developed a perinatal health framework guided by the International Classification of Functioning, Disability and Health (ICF) and the integrated perinatal health framework by Misra et al., Results: The proposed framework uses a life span perspective in a manner that directly addresses the multiple determinants specific to women with physical disabilities around the time of pregnancy. The framework is based on longitudinal and integrated perspectives that take into account women's functional status and environment over their life course., Conclusion: The perinatal health framework for women with physical disabilities was developed to inform the way researchers and health care professionals address disparities in perinatal health and health care among women with physical disabilities., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Background: Little is known about current societal attitudes toward women with significant mobility disability who are visibly pregnant., Objective: To use qualitative descriptive analysis methods to examine perceptions of women with significant mobility disability about how strangers reacted to their visible pregnancies., Methods: In late 2013, we conducted 2-h telephone interviews with 22 women with significant mobility difficulties who had delivered babies within the prior 10 years. The semi-structured, open-ended interview protocol addressed wide-ranging pregnancy-related topics, including statements from strangers. Most participants were recruited through social networks, coming from 17 states nationwide. We used NVivo to sort the texts for content analysis., Results: The women's mean (standard deviation) age was 34.8 (5.3) years; most were white, well-educated, and higher income, although half had Medicaid during their pregnancies; and 18 used wheeled mobility aids. Eighteen women described memorable interactions with strangers relating to their pregnancies or newborn babies. Strangers' statements fell into six categories: (1) curious; (2) intrusively and persistently curious; (3) hostile, including concerns that taxpayers would end up supporting the mother and child; (4) questioning woman's competence as a potential parent; (5) oblivious, not recognizing visible pregnancy or motherhood; and (6) positive. Many women reported strangers asking how their pregnancy had happened. The women doubted that visibly pregnant women without disabilities evoke the same reactions from strangers., Conclusions: Women with mobility disability who are visibly pregnant may perceive reactions from strangers that appear intrusive. Planning ahead for handling such encounters could reduce the stresses of these interactions., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Background: Trends in the patterns and prevalence of chronic disability among U.S. residents carry important implications for public health and public policies across multiple societal sectors., Objectives: To examine trends in U.S. adult population rates of chronic disability from 1998 to 2011 using 7 different disability measures and examining the implications of trends in population age, race and ethnicity, and body mass index (BMI)., Methods: We used National Health Interview Survey data on civilian, non-institutionalized U.S. residents ages ≥ 18 from selected years between 1998 and 2011. We used self-reported information on functional impairments, activity/participation limitations, and expected duration to create 7 chronic disability measures. We used direct standardization to account for changes in age, race/ethnicity, and BMI distributions over time. Multivariable logistic regression models identified associations of disability with sociodemographic characteristics., Results: Without adjustment, population rates of all 7 disabilities increased significantly (p < 0.0001) from 1998 to 2011. The absolute percentage change was greatest for movement difficulties: 19.3% in 1998 and 23.3% in 2011. After separate adjustments for trends in age, race/ethnicity, and BMI distributions, 6 disability types continued to show increased rates over time (p < 0.01), except for sensory disabilities. Over time, poor education, poverty, and unemployment remained significantly associated with disability., Conclusions: If these trends continue, the numbers and proportions of U.S. residents with various disabilities will continue rising in coming years. In particular, the prevalence of movement difficulties and work limitations will increase. Furthermore, disability will remain strongly associated with low levels of education, employment, and income., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Background: Although increasing numbers of reproductive-age U.S. women with chronic physical disabilities (CPD) are becoming pregnant, little is known about their general health or comorbid health conditions., Objectives: To explore general health and comorbid health conditions among women with and without CPD by current pregnancy status., Methods: We analyzed responses of 47,629 civilian, noninstitutionalized women ages 18-49 from the 2006-2011 National Health Interview Surveys. The survey asks about: various movement difficulties; selected adult health conditions; self-reported general health; and current pregnancy. We identified women with CPD using responses from 8 movement difficulty questions., Results: 6043 (12.7%) women report CPD. Among nondisabled women, 3.8% report current pregnancy, as do 2.0% of women with CPD. Among currently pregnant women with CPD, 29.1% report fair or poor health, compared with only 3.2% of nondisabled pregnant women. Currently pregnant women both with and without CPD are significantly less likely to report coexisting health conditions than nonpregnant women. Nonetheless, among currently pregnant women with CPD, only 24.5% report no coexisting conditions, while 28.7% report 1, 22.8% report 2, 13.2% report 3, and 10.8% report 4-6 health conditions. In a multivariable regression controlling for age category, health status, and health conditions, CPD is not statistically significantly associated with current pregnancy., Conclusions: According to national survey data, it appears that pregnant women with CPD may have a complex mix of health problems and often experience fair or poor health. Better understanding the obstetrical and subspecialty needs of these women with multimorbidities requires additional investigation., (Copyright © 2014 Elsevier Inc. All rights reserved.)

The number of Americans aging with disabilities will grow substantially in coming decades. Promulgating policies and practices to improve their independent functioning within communities and participation in daily life are therefore imperative, but the most effective approaches for meeting various needs are generally unknown. Historically, research addressing approaches targeting elderly individuals have differed in important ways (e.g., underlying models of disability) from studies involving younger persons aging with disabilities. Participants in a conference addressing this discordance identified six major areas requiring study: (1) resources to support independent living; (2) improving quality of life and participation in daily activities; (3) performing activities of daily living (ADL) and instrumental ADLs; (4) role of families; (5) medical care; and (6) concerns transcending sectors. As these investigations move forward, bridging the divide between approaches addressing elderly individuals versus persons with disabilities will be critical., (Copyright © 2014 Elsevier Inc. All rights reserved.)

Risk-adjusted hospital mortality rates are frequently used as putative indicators of hospital quality. These figures could become increasingly important as efforts escalate to contain U.S. health care costs while simultaneously maintaining or improving quality of care. Most risk adjustment methods today employ coded diagnostic information sometimes supplemented with more detailed clinical data obtained from medical records. This article considers whether risk-adjusted hospital mortality rates should account for baseline patient disability. Accounting for baseline disability when calculating hospital mortality rates makes clinical sense, especially for conditions such as heart failure or coronary artery bypass grafting surgery, where patients' cardiac-related functional status strongly predicts their imminent outcomes. A small body of research suggests the strength of disability in predicting hospital mortality, even in comparison with indicators of acute physiologic status and comorbid illness. However, the feasibility of obtaining complete and accurate data on patients' baseline disability will be challenging and requires further investigation. The risk of not adjusting for baseline disability could be efforts by physicians and hospitals to avoid treating patients with significant disabilities., (Copyright © 2014 Elsevier Inc. All rights reserved.)

According to the World Report on Disability, physicians worldwide generally lack training about caring for persons with disabilities, thus frequently compromising their health care experiences and health outcomes. Many U.S. physicians are similarly untrained about critical aspects of providing care to persons with disabilities, perhaps contributing to disparities in their care. Recognizing these inadequacies, U.S. medical educators are beginning to develop core competencies for trainees relating to the care of patients with disabilities, including understanding patients' perceptions of their quality of life and skills in providing patient-centered care. Having today's physicians, even when genuinely well-intentioned, retain control over designing disability-related training programs for future doctors may miss critical issues in caring empathically and effectively for persons with disabilities. Involving persons with disabilities in identifying training needs and implementing curricula for future physicians may offer important opportunities for ensuring their competency to provide patient-centered care to persons with disabilities., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Background: Despite social "safety net" programs, many U.S. residents with disabilities lack insurance coverage and thus risk financial barriers to accessing care. The study objectives were to characterize working-age adults with disabilities who lack health insurance and to examine their self-reported barriers to care., Methods: The authors conducted analyses of nationally representative Medical Expenditure Panel Survey data from 2000 through 2006., Results: During this time period, 14.8% of working-age U.S. residents lacked health insurance, including 11.6% of persons with disabilities. Focusing only on uninsured individuals, persons with disabilities were significantly (p = .001) more likely than those without disabilities to have a usual source of care. However, on 6 other access measures (those that comprised our composite indicator of access barriers), uninsured persons with disabilities reported barriers significantly (p = .001) more often than did individuals without disabilities: 36.0% of uninsured persons with disabilities reported being unable to get necessary medical care, compared with 9.5% of uninsured, nondisabled persons; and 26.9% of uninsured persons with disabilities reported being unable to get necessary medications, compared with 5.3% of uninsured individuals without disabilities. Having a cognitive impairment produced the largest adjusted odds ratio (AOR) of reporting any access barrier (1.64, 95% CI 144-1.87), while having lower body functional limitations or hearing deficits also produced relatively high AORs (1.47, 1.32-1.65 and 1.48, 1.11-1.98, respectively)., Conclusions: Uninsured individuals with disabilities confront significantly more barriers to accessing care than do nondisabled persons without health insurance. Certain types of disabilities appear especially associated with experiencing access barriers, suggesting areas requiring particular attention., (Copyright © 2011 Elsevier Inc. All rights reserved.)

Background: An appreciation of how human factors affect patient safety has led to development of safety climate surveys and recommendations that hospitals regularly assess safety attitudes among caregivers. A better understanding of variation in patient safety climate across units within hospitals would facilitate internal efforts to improve safety climate. A study was conducted to assess the extent and nature of variation in safety climate across units within an academic medical center., Methods: The Agency for Healthcare Research and Quality (AHRQ) Hospital Survey of Patient Safety was administered in 2008 to all nurses and attending physicians (N=4283) in a 900-bed acute care hospital (overall response rate, 69% [n=2961]). Responses were analyzed from the 2,163 physicians and nurses (73% of respondents) who could be assigned to one specific clinical unit. Results were examined for 57 units, categorized into six types., Results: Ratings of various safety climate domains differed markedly across the 57 units, with the percentage reporting a safety grade of excellent ranging from 0% to 50%. The overall percentage of positive ratings was lower for the operating and emergency unit types than for inpatient medical and other clinical units. Even within the six unit types, substantial variation across individual units was evident. Unlike previous findings, physicians reported more negative ratings than nurses for some safety climate dimensions., Conclusions: Safety climate may vary markedly within hospitals. Assessments of safety climate and educational and other interventions should anticipate considerable variation across units within individual hospitals. Furthermore, clinicians at individual hospitals may offer different relative perceptions of the safety climate than their professional peers at other hospitals.

Background: Difficulty walking is the most visible sign of disability among persons with multiple sclerosis (MS). However, little is known about mobility aid use by persons with MS living in the community., Objectives: To explore perceptions of mobility problems related to MS and patterns of mobility aid use by persons with MS residing in communities across the United States., Methods: We conducted a 30-minute telephone survey in mid-2007 with 703 community-dwelling, working-age adults who self-reported having MS. We identified potential survey respondents using membership lists of the National Multiple Sclerosis Society, oversampling individuals living in zip codes with relatively high poverty rates. All analyses, including calculation of simple percentages, used sampling weights to produce population estimates. The overall response rate was 73.4%. Survey questions asked basic information about all mobility aids used by respondents and details about up to two different aids. We used multivariable polychotomous logistic regression to predict use of various mobility aids accounting for demographic and disease characteristics., Results: In questions about the previous 2 weeks, needing to concentrate on walking because of MS was the most common problem cited (weighted percent = 79.3%), followed by MS making standing more difficult (69.9%), increased effort needed to walk (59.0%), and needing to hold onto furniture, walls, or someone's arm when walking indoors every day (40.0%). Among the 703 respondents, 434 (weighted percent = 60.5%) reported using at least one mobility aid; the majority of these individuals reported using more than one type of aid. Manual wheelchairs were the most common mobility aid (63.4%), followed by canes (56.7%), power wheelchairs (36.7%), and scooters (32.2%). Among those using three or more different types of mobility aids, the large majority used manual wheelchairs (88.2%), followed by canes (65.4%). Persons who are married or living with partners were much less likely to use powered equipment than those who were never married (adjusted odds ratio [AOR] = 0.32; 95% CI: 0.13-0.82). Women were much less likely than men to use powered equipment (AOR = 0.40; 95% CI: 0.21-0.75)., Conclusion: The vast majority of persons with MS who use at least one mobility aid own more than one type and about half own three or more different types of mobility aids. Persons with MS appear to "mix and match" different devices to suit their specific mobility needs. Given restrictive health insurance coverage policies for mobility aids, these findings raise questions about how persons acquire and pay for higher-technology mobility aids.

Background: The recent literature contains numerous reports of disparities in the diagnosis, treatment, and outcomes of lung cancer across a growing list of population subgroups, including disability status. A common assumption is that disparities stem mainly from variations in the level and type of treatment resources available to specific subgroups. Few studies, however, have directly measured resource differentials. Since policy makers identify reducing health disparities as a critical priority, this study examined whether cumulative Medicare costs (resource consumption) for lung cancer treatment differ across eight patient subgroups defined by disability status, sex, and race., Hypothesis: Treatment disparities across the eight subgroups will be reflected in variations in the cumulative cost profiles of those subgroups, controlling for other plausible cost drivers. Failure to detect statistically significant differentials in these cost profiles implies that treatment disparities stem from factors other than access to, and utilization of, health care services., Methods: Linked SEER-Medicare data were used to construct cost profiles by service type and treatment phase for roughly 80,000 incident lung cancer cases in patients aged 45 to 85 years at diagnosis. Multiple regression models then tested for cost differentials across the eight subgroups, controlling for various patient and disease characteristics., Results: Significant cost differentials were detected, some unanticipated. Women tended to have higher treatment costs than men; they also had more favorable survivals. Nonwhites also tended to have higher treatment costs than whites, although they had significantly shorter survivals. On average, men with disabilities consumed the fewest treatment resources and had the shortest survivals. Mixed results were obtained for women with disabilities., Conclusions: Among others, the findings suggest that reducing disparities will take more than just improving access to health care. Special attention must be paid to lung cancer patients with disabilities by both policy makers and clinicians.