Search

This JAMA Insights article reviews Americans with Disabilities Act (ADA) rules for patients, visitors, and other members of the public bringing service animals into health care settings. [ABSTRACT FROM AUTHOR]

The article focuses on expressing disappointment with the National Institutes of Health (NIH) for planning to eliminate language about reducing disability in its mission statement, arguing against the erasure and devaluation of people with disabilities.

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community. [ABSTRACT FROM AUTHOR]

This Viewpoint emphasizes the importance of policy statements using "person-first" language to mitigate discrimination against people with disabilities and to boost modern views in the medical and research communities. [ABSTRACT FROM AUTHOR]

For Americans with significant disability, decisions about where to live are common flashpoints for the dignity of risk principle. Typically, a health-care professional, like the person's primary care physician, argues that the person is unsafe living at home and therefore must enter a nursing home. However, most people—even with extensive activities of daily living support needs—want to remain home in their communities. The belief that nursing homes offer safer residential environments is unproven and highly suspect. Furthermore, removing people from their personal home comforts diminishes their quality of life. Nonetheless, despite the clear moral imperative of the dignity of risk principle, many factors in the United States impede people with significant disability from remaining at home. Ableist and stigmatized attitudes of physicians about quality of life among people with disability are potential contributors. Few people have adequate financial resources to afford the personal assistance services (PAS) they need for daily basic supports. Medicaid, the major public payor for PAS, is difficult to join, varies widely by state, and has long waiting lists for home and community-based services. These issues are explored using stories from the author's friend Michael, who has significant physical disability and lives home alone. [ABSTRACT FROM AUTHOR]

About 15% of the global population-more than 1 billion people-have a disability. People with early-onset disability are now living into middle and older ages and are therefore at risk for adult cancer. Overall, disabled people are more disadvantaged in social determinants of health and are more likely to have risk factors associated with cancer than people without disabilities. People with disabilities often experience disparities in breast and cervical cancer screening compared with people who do not have disabilities, and patterns in colorectal cancer screening disparities are inconsistent. The minimal evidence that exists relating to the timeliness of cancer diagnosis, treatment, and outcomes for people with disabilities suggests differential treatment and higher cancer-related mortality than for people without disabilities. Worldwide, disabled people face barriers to obtaining cancer care, including inaccessible medical diagnostic equipment, ineffective communication accommodations, and potentially biased attitudes among clinicians. Ensuring equitable cancer care for people with disabilities will therefore require eliminating not only physical but also attitude-based barriers to their care. [ABSTRACT FROM AUTHOR]

In this Viewpoint, the authors urge the USPSTF to undertake a comprehensive effort to ensure its recommendations systematically consider the effects of ableism and structural ableism on individuals with disability. [ABSTRACT FROM AUTHOR]

Americans generally want to remain in their homes even if they develop chronic health problems or disabilities that qualify them for nursing home care. While family members or friends provide the preponderance of home-based support, millions of Americans use paid personal assistance services (PAS). Inexorable demographic trends are increasing the numbers of people who need paid home-based PAS, with this need rapidly outstripping the capacity of the paid PAS workforce. While many factors contribute to this widening discrepancy, its roots reach back more than eighty years to asynchrony among various policies affecting home-based supports for people with functional impairments and policies affecting home-based PAS workers. Finding solutions to the growing gap between demand for the services and the PAS workforce requires policies that cut across societal sectors and align incentives for consumers, workers, and other key stakeholders. [ABSTRACT FROM AUTHOR]

Background Although growing numbers of women with mobility disability are becoming pregnant and desiring motherhood, relatively little is known about their pregnancy experiences or what they might recommend to other women with mobility disability contemplating pregnancy. Methods Using a semistructured, open-ended interview protocol, we conducted 2-hour telephone interviews with 22 women who had a significant mobility disability before becoming pregnant and had delivered babies within the prior 10 years. We recruited most interviewees through online social networks. We used NVivo software to sort interview transcript texts and performed conventional content analyses to identify major themes. Results Participants’ mean ± standard deviation age was 34.8 ± 5.3 years; most were White, well-educated, and middle income and 18 used wheeled mobility aids. Recommendations for other women with mobility disability coalesced around five themes: recognizing the possibility of giving birth, advocacy and support, being informed, approaches toward obstetrical practitioners, and managing fears about losing custody of their child. Lacking information about what to expect during their pregnancy was a significant problem. Women got information about pregnancy from diverse sources, but questions arose about accuracy and relevance of this information to individual circumstances. Women urged their peers to advocate for their preferences and needs with obstetrical practitioners. Conclusions Women with mobility disability who had delivered babies offered constructive advice for their peers who desire pregnancy. Increasing availability of accurate and relevant information about pregnancy among women with mobility disability is critically important, as is training obstetrical practitioners to provide patient-centered care to these women during pregnancy. [ABSTRACT FROM AUTHOR]

Background: Notwithstanding near-universal agreement on the theoretical importance of truthfulness, empirical research has documented gaps between ethical norms and physician behaviors. Although prior research has explored situations in which physicians may not be truthful with patients, it has focused on contexts within specialty practice. In this article, we report on a qualitative study of truthfulness in primary care.Methods: We conducted a qualitative study during December 2014–March 2015 involving both focus groups and in-depth, semistructured interviews with 32 primary care physicians from the Boston, MA, and Baltimore, MD, metro areas in three specialties: internal medicine, family practice, and pediatrics. Interviews and focus groups were led using a semistructured guide, which explored situations in which primary care physicians find it difficult to be honest with patients; factors shaping truthfulness; and rationales for truthful and untruthful communication.Results: While physicians described outright lying to patients as rare, other deviations from truthfulness were not uncommon, including slanting and deliberately withholding information. Physicians described a range of factors as influencing truthfulness, from patient-level characteristics such as educational background to societal considerations including avoiding unnecessary tests and procedures. Physicians described truthfulness as an ethical requirement, deviations from which required further justification. Perceived justifications included promoting patient well-being and avoiding harm.Conclusions: Our results suggest a potential need to augment opportunities for training in “everyday ethics” challenges, such as the appropriateness of deception in response to patient requests for inappropriate tests or pain medications. Furthermore, they indicate that, in various circumstances encountered in primary care, physicians perceive other moral duties as potentially in conflict with the duty of truthfulness. Further ethical analysis should focus on identifying when deviations from complete truthfulness do and do not serve patients' interests, to guide physicians in striking a reasonable balance among principles of medical ethics that may conflict with one another. [ABSTRACT FROM PUBLISHER]

Erroneous assumptions among health care professionals about the daily lives, preferences, values, and expectations of persons with disability can contribute to documented health care disparities, faulty communication, and substandard quality of care affecting this heterogeneous population. Efforts to reduce racial and ethnic disparities have focused on expanding diversity in the physician workforce. Would expanding the numbers of physicians with disability benefit patients with disability? Increasing the number of physicians who identify as "disabled" is one strategy for proactively confronting disability-related barriers affecting patients, but such efforts will likely face substantial challenges. Nonetheless, physicians who require accommodations to practice (e.g., a heightadjustable examination table) could plausibly benefit patients needing similar accommodations and perhaps be well-positioned to provide patient-centered care to persons with comparable disability. [ABSTRACT FROM AUTHOR]

Introduction: Data from 20 years ago--shortly after passage of the Americans with Disabilities Act--showed that women with significant mobility disability had 40% lower Pap test rates than other women.Methods: To examine whether disability disparities in Pap test rates have diminished over time, this study analyzed National Health Interview Survey responses from selected years between 1998 and 2010 from women aged 21-65 years without histories of cervical cancer or hysterectomy. Seven chronic disability types were identified using self-reported functional impairments or participation limitations. Self-reported Pap testing within the previous 3 years was studied. Bivariable analyses and multivariable logistic regression analyses controlling for sociodemographic variables were conducted in 2014.Results: Rates of all chronic disability types increased over time. Pap test rates remained relatively constant over time for all women, holding around 84%-87%. Bivariable analyses found statistically significantly lower rates of Pap testing for women with disability compared with nondisabled women. Multivariable analyses failed to find consistent evidence of lower Pap test rates among women across disability types compared with nondisabled women. In 2010, the AOR for reporting Pap testing for women noting the most severe movement difficulty compared with nondisabled women was 0.35 (95% CI=0.15, 0.79). However, the AOR for this disability type varied over time.Conclusions: Little has changed over time in Pap test rates for all women. Women with certain disabilities continue to experience disparities compared with nondisabled women in receipt of this important screening test. [ABSTRACT FROM AUTHOR]

Background: Routine prenatal care includes physical examinations and weight measurement. Little is known about whether access barriers to medical diagnostic equipment, such as examination tables and weight scales, affect prenatal care among pregnant women with physical disabilities. Methods: We conducted 2-hour, in-depth telephone interviews with 22 women using a semistructured, open-ended interview protocol. All women had significant mobility difficulties before pregnancy and had delivered babies within the prior 10 years. We recruited most participants through social networks. We sorted interview transcript texts using used NVivo software and conducted conventional content analyses to identify major themes. Results: Interviewee's mean (standard deviation) age was 34.8 (5.3) years. Most were white, well-educated, and higher income; 8 women had spinal cord injuries, 4 cerebral palsy, and 10 had other conditions; 18 used wheeled mobility aids. Some women's obstetricians had height adjustable examination tables, which facilitated transfers for physical examinations. Other women had difficulty transferring onto fixed height examination tables and were examined while sitting in their wheelchairs. Family members and/or clinical staff sometimes assisted with transfers; some women reported concerns about transfer safety. No women reported being routinely weighed on an accessible weight scale by their prenatal care clinicians. A few were never weighed during their pregnancies. Conclusions: Inaccessible examination tables and weight scales impede some pregnant women with physical disabilities from getting routine prenatal physical examinations and weight measurement. This represents substandard care. Adjustable height examination tables and wheelchair accessible weight scales could significantly improve care and comfort for pregnant women with physical disabilities. [ABSTRACT FROM AUTHOR]

The article presents a case study of the body image perception of women with existing physical disability who developed early-stage breast cancer. It describes the method of the study that uses a semi-structured interview guide to determine how disability affects treatment decision-making. The result of the study indicates that women with physical disabilities have varied attitudes about the importance of body image relative to breast cancer treatment.

The article discusses a decision by US Department of Justice in year 2017 to withdraw four Advance Notices of Proposed Rulemaking concerning Titles II and III of Americans with Disabilities Act. The notices included rulemaking about making medical diagnostic equipment accessible to disabled persons.

The authors discuss a report about inherent bias within health care due to misperceptions about their quality of life. Topics mentioned include health care decision-making and reliance on the quality-adjusted life-year examined by the National Council on Disability in 2019, bias against older adults in health care settings, and campaign by U.S. President Joseph R. Biden, Jr. on equality for people with disabilities.

Background: Women with disabilities often receive mammograms at lower rates than do nondisabled women, although this disparity varies by disability type and severity. Given the implementation of disability civil rights laws in the early 1990s, we examined whether disability disparities in mammogram use have diminished over time. Methods: We analyzed National Health Interview Survey responses of civilian, noninstitutionalized United States female residents 50 to 74 years old from selected years between 1998 and 2010. We identified seven chronic disability types using self-reported functional impairments, activity/participation limitations, and expected duration. We conducted bivariable and multivariable logistic regression analyses examining associations of self-reported mammogram use within the previous two years with sociodemographic factors and disability. Results: Most chronic disability rates rose over time. The most common disability was movement difficulties, with rates increasing from 35.6% (1998) to 39.8% (2010). Mammogram rates for all women remained relatively stable over time, ranging from 72% to 75%. Bivariable analyses generally found statistically significantly lower mammogram rates for women with disability versus nondisabled women. Over time, disparities grew significantly between women with any basic action difficulty or complex activity limitation and nondisabled women ( p<0.01). In multivariable logistic analyses, having any difficulty with basic actions was significantly associated with lower adjusted odds of mammography; for example, adjusted odds [95% confidence interval]=0.5 [0.3-0.8], p=0.006, in the model involving movement disability. Conclusions: Little has changed since 1998 in mammogram rates for women with versus without disabilities. Women with certain disabilities continue to experience disparities in mammography testing. [ABSTRACT FROM AUTHOR]

Objective Little is known about how functional impairments might affect the pregnancies of women with mobility disability. We aimed to explore complications that arise during pregnancy that are specifically related to physical functional impairments of women with significant mobility disabilities. Design Qualitative descriptive analysis. Setting Telephone interviews with women from 17 USA states. Sample 22 women with significant mobility difficulties who had delivered babies within the prior 10 years; most participants were recruited through social networks. Methods We conducted 2-h, in-depth telephone interviews using a semi-structured, open-ended interview protocol. We used NVIVO software to sort interview transcript texts for conventional content analyses. Main outcome measures Functional impairment-related complications during pregnancy. Results The women's mean (standard deviation) age was 34.8 (5.3) years. Most were white, well-educated, and higher income; eight women had spinal cord injuries, four cerebral palsy, and 10 had other conditions; 18 used wheeled mobility aids; and 14 had cesarean deliveries (eight elective). Impairment-related complications during pregnancy included: falls; urinary tract and bladder problems; wheelchair fit and stability problems that reduced mobility and compromised safety; significant shortness of breath, sometimes requiring respiratory support; increased spasticity; bowel management difficulties; and skin integrity problems (this was rare, but many women greatly increased skin monitoring during pregnancy to prevent pressure ulcers). Conclusions In addition to other pregnancy-associated health risks, women with mobility disabilities appear to experience problems relating to their functional impairments. Pre-conception planning and in-depth discussions during early pregnancy could potentially assist women with mobility disabilities to anticipate and address these difficulties. [ABSTRACT FROM AUTHOR]

The article discusses the barriers facing persons with disabilities when attempting to access the U.S. health care system. Topics include physical barriers to care including elevators, ramps, parking, doorways and bathrooms, the lack of clear standards for accessible medical equipment, and the need to review policies and procedures to include reservation of accessible equipment and staff when patients are expected for an appointment and flagging of any special needs in the scheduling system.

Abstract: 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 &y& Elsevier]

Fifty-four million people in the United States are now living with disabilities. That number will grow substantially in the next thirty years, as the "baby-boom" generation ages and many of today's children and young adults mature and experience complications related to overweight and obesity. This reality poses a major challenge to the health care and policy communities. People with disabilities confront disadvantages from social and environmental determinants of health, including lower educational levels, lower incomes, and higher unemployment, than people without disabilities. Those with disabilities are also much more likely to report being in fair or poor health; to use tobacco; to forgo physical activity; and to be overweight or obese. People with disabilities also experience health care disparities, such as lower rates of screening and more difficulty accessing services, compared to people without disabilities. Eliminating these multifaceted disadvantages among people with disabilities should be a critical national priority. [ABSTRACT FROM AUTHOR]

Background: Among women with chronic, preexisting mobility impairments, we sought to explore how their mobility difficulties affected the diagnosis and treatment of early-stage breast cancer Methods: This is a qualitative analysis of transcripts from in-depth in-person or telephone interviews with 20 English-speaking women who had early-stage breast cancer, were <60 years of age, and had chronic difficulty walking or used wheeled mobility aids at the time of their breast cancer diagnoses Results: Nine women were disabled by polio as children or had postpolio syndrome, 3 had cerebral palsy, 3 had spinal cord injury, and 5 had other conditions. Most women reported difficulty obtaining mammograms, primarily because of inaccessible equipment, positioning problems, and difficulties with uncontrollable movements. Many women made decisions about surgical approach and chemotherapy by explicitly considering how various therapies would affect their arms, which are essential to their mobility (they use ambulation aids, self-propel manual wheelchairs, or otherwise rely on their arms for mobility or safety). Managing at home after surgery posed major mobility challenges, especially for women who lived alone. Several women reported feeling they suffered more chemotherapy side effects than do women without mobility problems. Weight gains with endocrine therapy compromised the mobility of several women. Conclusions: Increasing numbers of American women are living with mobility disabilities and entering age ranges with increased risks of breast cancer. Mobility impairments can affect women at every point during early-stage breast cancer diagnosis, therapy, and recovery. Clinicians must consider women's mobility functioning in making therapeutic recommendations to women with impaired mobility who develop breast cancer. [ABSTRACT FROM AUTHOR]

The article presents a research study which examines the patterns of acquiring and using mobility aids among the residents in the U.S. with multiple sclerosis. It claims that a 30-minutes telephone survey was conducted with 703 community-dwelling and working-age adult members of the National Multiple Sclerosis Society. The study ends that multiple sclerosis patients own a number mobility aids but can confront significant barriers to their use particularly within homes.

Purpose/Objectives: To explore the perceptions of patients with breast cancer with mobility impairments of the physical accessibility of healthcare facilities and equipment.Research Approach: Individual audiotaped interviews lasting one to two hours.Setting: Interviews in homes or workplaces or by telephone.Participants: 20 women with chronic mobility impairments who developed early-stage breast cancer prior to age 60. Three were recruited from oncologist panels and 17 from informal social networks of disabled women nationwide.Methodologic Approach: Qualitative analyses of interview transcripts to identify common themes.Main Research Variables: Extent and nature of mobility impairments and concerns raised by patients about barriers to care.Findings: The 20 participants identified issues with inaccessible equipment, including mammography machines, examining tables, and weight scales. The patients sometimes needed to insist on being transferred to an examining table when physicians preferred to examine them seated in their wheelchairs. When staff would transfer them, patients feared injury or felt badly when clinical personnel were injured during transfers. Other issues included difficulties with positioning and handling patients' uncontrollable movements. Even when clinical sites had accessible equipment, this equipment was sometimes unavailable for the appointment.Conclusions: Women with major mobility issues who developed breast cancer confronted numerous physical barriers during the course of their breast cancer diagnosis and treatment.Interpretation: With the aging of the baby boomer generation, an increasing number of people with mobility impairments will be seeking healthcare services. Healthcare providers should be proactive in planning to accommodate these patients by considering accessibility whenever they acquire new equipment, renovate older structures, or build new facilities. They also should establish policies and procedures to ensure that equipment is available during appointments of patients with mobility issues and that staff are trained in safe transferring procedures. Ensuring accommodations and accessibility will benefit patients with impaired mobility and clinical staff. [ABSTRACT FROM AUTHOR]

Increasing numbers of Americans are living with multiple chronic conditions (MCCs) and disabilities. Addressing health care needs of persons with MCCs or disabilities presents challenges on many levels. For health services researchers, priorities include (1) considering MCCs and disabilities in comparative effectiveness research (CER) and assessing quality of care; and (2) identifying and evaluating the data needed to conduct CER, performance measure development, and other research to inform health policy and public health decisions concerning persons with MCCs or disabilities. Little information is available to guide CER or treatment choices for persons with MCCs or disabilities, however, because they are typically excluded from clinical trials that produce the scientific evidence base. Furthermore, most research funding flows through public and private agencies oriented around single organ systems or diseases. Likely changes in the data landscape—notably wider dissemination of electronic health records (EHRs) and moving toward updated coding nomenclatures—may increase the information available to monitor health care service delivery and quality for persons with MCCs and disabilities. Generating this information will require new methods to extract and code information about MCCs and functional status from EHRs, especially narrative texts, and incorporating coding nomenclatures that capture critical dimensions of functional status and disability. [ABSTRACT FROM AUTHOR]

Haiti's earthquake caused untold numbers of new disabilities across the age spectrum, from infants and children to elderly individuals. Amputations, spinal cord and brain injuries, complex multiple fractures, and other massive trauma will leave residual impairments, precipitating pressing needs at both the individual and societal levels. Short-term priorities include clinical stabilization, wound healing, and surgical revisions of suboptimal repairs. Afterward, in the near term, comprehensive rehabilitation must commence to ensure the best possible functional outcomes. Even before the earthquake struck, Haiti had few rehabilitation professionals and little capacity to manufacture essential assistive technologies, including prostheses and wheelchairs. While international organizations are assisting to fill these gaps, ultimately rehabilitation programs and assistive technologies will need to fit the specific demands of Haiti's culture and rugged natural physical environment. As Haiti rebuilds its public and private spaces, ensuring accessibility to persons with disabilities will be critical. Ultimately, one positive legacy of Haiti's earthquake could be the emergence of social attitudes, public policies, and physical environments that more fully accommodate disability across the life span. [ABSTRACT FROM AUTHOR]

Objective: To explore how underlying disability affects treatments and outcomes of disabled women with breast cancer.Data Sources: Surveillance, Epidemiology, and End Results program data, linked with Medicare files and Social Security Administration disability group.Study Design: Ninety thousand two hundred and forty-three incident cases of early-stage breast cancer under age 65; adjusted relative risks and hazards ratios examined treatments and survival, respectively, for women in four disability groups compared with nondisabled women.Principal Findings: Demographic characteristics, treatments, and survival varied among four disability groups. Compared with nondisabled women, those with mental disorders and neurological conditions had significantly lower adjusted rates of breast conserving surgery and radiation therapy. Survival outcomes also varied by disability type.Conclusions: Compared with nondisabled women, certain subgroups of women with disabilities are especially likely to experience disparities in care for breast cancer. [ABSTRACT FROM AUTHOR]

The article introduces a series of essays which explore the rich and complex challenges of life, death, and fairness in hospitals in the U.S. Lisa Iezzoni, a professor of medicine, has written narrative pieces about barriers to care encountered by disabled patients. Ray Bingham, at the National Institutes of Health's National Institute of Nursing Research, describes a skirmish between a nurse and a doctor over the care of a premature infant.

Persons with major mental illness often have chronic diseases and poor physical health. Therefore, all practicing physicians should learn about communicating effectively with these patients. Few efforts to teach medical students communication skills have specifically targeted patients with major mental illness. Indeed, most of the limited literature on this topic is decades old, predating significant scientific advances in cognitive neuroscience and psychiatric therapeutics and changes in social policies regarding major mental illness. To gather preliminary insight into training needs, we interviewed 13 final-year students from 2 Boston medical schools. Students' observations coalesced around 4 themes: fears and anxieties about interacting with persons with major mental illness: residents ‘protecting’ students from patients with major mental illness: lack of clinical maturity: and barriers to learning during psychiatry rotations. Educational researchers must explore ways to better prepare young physicians to communicate effectively with patients with major mental illness. [ABSTRACT FROM AUTHOR]

Objective. To learn about the health care experiences of rural residents with disabilities. Study Setting. Rural areas in Massachusetts and Virginia. Study Design. Local centers for independent living recruited 35 adults with sensory, physical, or psychiatric disabilities to participate in four focus group interviews. Data Collection Methods. Verbatim transcripts of interviews were reviewed to identify major themes. Principal Findings. Interviewees described the many well-recognized impediments to health care in rural America; disability appears to exacerbate these barriers. Interviewees reported substantial difficulties finding physicians who understand their disabilities and sometimes feel that they must teach their local doctors about their underlying conditions. Interviewees described needing to travel periodically to large medical centers to get necessary specialty care. Many are poor and are either uninsured or have Medicaid coverage, complicating their searches for willing primary care physicians. Because many cannot drive, they face great difficulties getting to their local doctor and especially making long trips to urban centers. Available public transportation often is inaccessible and unreliable. Physicians' offices are sometimes located in old buildings that do not have accessible entrances or equipment. Based on their personal experiences, interviewees perceive that rural areas are generally less sensitive to disability access issues than urban areas. Conclusions. Meeting the health care needs of rural residents with disabilities will require interventions beyond health care, involving transportation and access issues more broadly. [ABSTRACT FROM AUTHOR]

The article presents an abstract which discusses the author's comments on the importance of partnerships in building research capacity. Partnerships between persons with disabilities and research teams are very crucial, specially for studies that aim to improve health outcomes valued by persons with disabilities. According to the U.S. Institute of Medicine, persons who have lived with impairments can become "experts" in the physical, and even physiologic, functioning of their bodies and their information about their conditions can rival that of many physicians. The physical medicine and rehabilitation (PM&R) specialists often work in multidisciplinary teams, partnering with other clinical professionals and adding patients to this team makes sense as each would contribute their unique expertise. It is very important to give special attention to communication for collaborative clinical care and there should exist shared sense of trust, respect, purpose, and goals. The PM&R researchers should introduce the potential collaborators to the research process and should listen to their ideas about critical areas for study.

To determine whether those persons whose sensory or physical functioning improved or worsened over one year are more or less satisfied with their health care.1996 and 1997 Medicare Current Beneficiary Survey (MCBS).The MCBS surveys a nationally representative, longitudinal panel of Medicare beneficiaries about their sociodemographic attributes; vision, hearing, and various mobility functions; and 10 items representing satisfaction with and access to health care. Using multivariable logistic regression and controlling for sociodemographic factors, we computed adjusted odds ratios of dissatisfaction with care, examining the effects of changes in sensory or physical functioning. Analyses accounted for MCBS sampling weights.We identified 9,974 community-dwelling respondents, 18 years old and over who answered the 1996 and 1997 MCBS. We assessed five categories of sensory or physical functioning (vision; hearing; walking; reaching overhead; and grasping and writing) and compared 1996 and 1997 responses to identify those whose functioning improved or worsened.Worsened functioning was strongly associated with older age, low income, and low educational attainment. Improved functioning was rarely significantly associated with satisfaction; an exception involved substantially lower rates of dissatisfaction with“ease and convenience” of getting to physicians. Worsened functioning was often statistically significantly associated with dissatisfaction, always with adjusted odds ratios>1.0. Across all five functional categories, persons whose functioning worsened displayed significantly greater dissatisfaction with overall quality, ease, and costs or care.Persons whose functioning improved rarely reported better satisfaction than did those whose functioning did not improve, while those whose functioning worsened expressed more systematic reservations about their care. [ABSTRACT FROM AUTHOR]

Background: Achieving patient-centered care requires effective communication between physicians and patients. Persons who aredeaf or hard of hearing face considerable barriers to communicating with physicians. Objective: To understand perceptions of health care experiences and suggestions for improving care among deaf or hard-of-hearing individuals. Design: 4 semistructured group interviews, 2 conducted in American Sign Language (for deaf individuals) and 2 using Communication Access Realtime Translation (for hard-of-hearing individuals). Men and women were interviewed separately. Tapes of interviews were transcribed verbatim for analysis.Setting: Greater Boston, Massachusetts, and Washington, DC, in 2001. Participants: 14 deaf adults (23 to 51 years of age) and 12 hard-of-hearing adults (30 to 74 years of age). Measurements: Commonly expressed themes or views organized around dimensions of communication. Results: Concerns coalesced around 6 broad themes: conflicting views between physicians and patients about being deaf or hard of hearing; different perceptions about what constitutes effective communication (such as lip reading, writing notes, and sign language interpreter); medication safety and other risks posed by inadequate communication; communication problems duringphysical examinations and procedures; difficulties interacting with office staff, including in waiting rooms; and problems with telephonecommunication, such as lengthy message menus. Participants offered extensive suggestions for improvements, startingwith clinicians' asking patients about their preferred communication approach. Having patients repeat critical health information(such as medication instructions) can identify potentially dangerous miscommunication.

Background: People with physical and sensory disabilities face important challenges in obtaining high-quality health care. We examined whether persons who are blind or have low vision, who are deaf or hard of hearing, or who have mobility impairments or manual dexterity problems are satisfied with the technical and interpersonal aspects of their care. Methods: By using a 1996 nationally representative survey of 16 403 community-dwelling elderly and disabled Medicare beneficiaries, we identified persons with disabling conditions. Adjusted odds ratios (AORs) and 95% confidence intervals (CIs) controlled for demographic characteristics and managed care membership in predicting dissatisfaction with 12 dimensions of care. Results: Of an estimated 33.58 million noninstitutionalized Medicare beneficiaries, 64.1% (an estimated 21.51 million) reported at least 1 potential disability and 29.5% (an estimated 9.89 million) reported more than 1 potential disability. Roughly 98% of people with and without disabilities believed their physicians were competent and well trained. But statistically significantly more people with disabilities reported dissatisfaction with care for 10 of the 12 quality dimensions. Persons reporting any major disability were more likely to be dissatisfied with physicians completely understanding their conditions (AOR, 2.4; 95% CI, 1.9-3.1), physicians completely discussing patients' health problems (AOR, 2.4; 95% CI, 1.9-2.9), physicians answering all patients' questions (AOR, 2.3; 95% CI, 1.7-3.1), and physicians often seeming hurried (AOR, 1.6; 95% CI, 1.4-1.9). Conclusions: Persons with disabilities generally reported positive views of their care, although they were significantly more likely to report poor communication and lack of thorough care. These findings held regardless of the disabling condition. Thoughtful systematic approaches are required to improve communication and to reduce time pressures that might compromise the health care experiences of people with disabilities. [ABSTRACT FROM AUTHOR]

An unknown number of medical school faculty have disabilities, and their experiences have generally escaped notice and scrutiny. Although most medical schools offer long-term insurance and extended leaves of absence for disability, relatively few have policies explicitly addressing accommodations for faculty with disabilities as they perform teaching, research, and clinical duties. We discuss accommodating active medical school faculty with disabilities, drawing on University of Pennsylvania School of Medicine initiatives exploring the concerns of faculty with sensory and physical disabilities. Anecdotal reports suggest that many faculty, fearing reprisals, resist seeking job accommodations such as those mandated in the 1990 Americans with Disabilities Act (ADA). Although some faculty with disabilities have found supportive academic mentors, others report that lax institutional enforcement of ADA requirements, including physical access problems, demonstrates a tepid commitment to disabled staff. Potentially useful job accommodations include adjusting timelines for promotion decisions; reassessing promotions requirements that inherently require extensive travel; improving physical access to teaching, research, and clinical sites; and modifying clinical and teaching schedules. Faculty with disabilities bring identical intellectual and collegial benefits to medical schools as their nondisabled counterparts. In addition, they may offer special insights into how chronic illness and impairments affect daily life. [ABSTRACT FROM AUTHOR]

Administrative data result from administering health plans—tracking service utilization, paying claims, monitoring costs and quality—and have been used extensively for health services research. This article examines the strengths and limitations of administrative data for health services research studies of people with disabilities. Administrative data offer important advantages: encompassing large populations over time, ready availability, low cost, and computer readability. Questions arise about how to identify people with disabilities, capture disability-related services, and determine meaningful health care outcomes. Potentially useful administrative data elements include eligibility for Medicare or Medicaid through Social Security disability determinations, diagnosis and procedure codes, pharmacy claims, and durable medical equipment claims. Linking administrative data to survey or other data sources enhances the utility of administrative data for disability studies. [ABSTRACT FROM AUTHOR]

Background: Lower extremity mobility difficulties often result from common medical conditions and can disrupt both physical and emotional well-being.Objectives: To assess the national prevalence of mobility difficulties among noninstitutionalized adults and to examine associations with demographic characteristics and other physical and mental health problems.Design: Cross-sectional survey using the 1994-1995 National Health Interview Survey-Disability Supplement (NHIS-D). We constructed measures of minor, moderate, and major lower extremity mobility difficulties using questions about ability to walk, climb stairs, and stand, and use of mobility aids (e.g., canes, wheelchairs). Age and gender adjustment used direct standardization methods in Software for the Statistical Analysis of Correlated Data (SUDAAN).Participants: Noninstitutionalized, civilian U.S. residents aged 18 years and older. National Health Interview Survey sampling weights with SUDAAN provided nationally representative population estimates.Results: An estimated 19 million people (10.1%) reported some mobility difficulty. The mean age of those with minor, moderate, or major difficulty ranged from 59 to 67 years. Of those reporting major difficulties, 32% said their problems began at aged 50 years or younger. Adjusted problem rates were higher among women (11.8%) than men (8.8%), and higher among African American (15.0%) than whites (10.0%). Persons with mobility difficulties were more likely to be poorly educated, living alone, impoverished, obese, and having problems conducting daily activities. Among persons with major mobility difficulties, 30.6% reported being frequently depressed or anxious, compared to 3.8% for persons without mobility difficulties.Conclusions: Reports of mobility difficulties are common, including among middle-aged adults. Associations with poor performance of daily activities, depression, anxiety, and poverty highlight the need for comprehensive care for persons with mobility problems. [ABSTRACT FROM AUTHOR]

Presents the medical case of a 44-year-old woman with amyotrophic lateral sclerosis (ALS) who is having increasing difficulty ambulating. Symptoms; Views of the patient and doctor on her condition; Prevalence of disability and impaired mobility in the United States; Psychosocial and emotional effects of impaired mobility; Role of health professionals in addressing mobility impairments; Mobility aids; Health insurance and financial implications; Resources.

Deals with a study which examined the use of screening and preventive services among adults with mobility problems of physical impairments. Methodology; Results; Discussion. [ABSTRACT FROM AUTHOR]

The article discusses a study which examined the impact of the COVID-19 pandemic on adults' access to medical care services by presence and type of disability which showed that adults with disabilities experienced significant disparities in delayed and unmet need for medical care. Topics covered include the factors contributing to inequities in delaying medical care and unmet needs, the limitations of the study and the implications for policy and practice.

Presents an individual's experience while being a patient with multiple sclerosis. Reference to a conversation between the individual and his former professor, about his condition; Difficulty in communicating around a disability; Problems which persons in wheelchairs face; How persons with and without disabilities can communicate.

Relates how the author, who suffers with multiple sclerosis, regained her independence and spirit with an electric wheelchair. Statistics on people with walking difficulties; Impact of walking problems on quality of life; Communication between doctors and patients about walking difficulties; Buying a wheelchair.

Considers how risk adjustment is essential before comparing patient outcomes across hospitals. Examination of the history and practices of risk adjusting hospital death rates; Consideration of the implications for using risk-adjusted mortality comparison to assess quality; Data source and study selection; Results; Conclusions.

Presents information on a study which examined the hypothesis that greater severity of illness explains the higher costs of hospitalizations at teaching compared with nonteaching hospitals. Hospital selection; Measurement of severity of patient illness; Cost variable; Patient characteristics.

Deals with a study which evaluated the appropriateness of diagnostic coding of acute myocardial infarction (MI) across teaching and non-teaching hospitals. Origin of MI; Confirmation of acute MI; Criteria for the diagnosis of the disease.

Objectives. This research examined whether judgments about a hospital's risk-adjusted mortality performance are affected by the severity-adjustment method. Methods. Data came from 100 acute care hospitals nationwide and 11 880 adults admitted in 1991 for acute myocardial infarction. Ten severity measures were used in separate multivariable logistic models predicting in-hospital death. Observed-to-expected death rates and z scores were calculated with each severity measure for each hospital. Results. Unadjusted mortality rates for the 100 hospitals ranged from 4.8% to 26.4%. For 32 hospitals, observed mortality rates differed significantly from expected rates for 1 or more, but not for all 10, severity measures. Agreement between pairs of severity measures on whether hospitals were flagged as statistical mortality outliers ranged from fair to good. Severity measures based on medical records frequently disagreed with measures based on discharge abstracts. Conclusions. Although the 10 severity measures agreed about relative hospital performance more often than would be expected by chance, assessments of individual hospital mortality rates varied by different severity-adjustment methods. [ABSTRACT FROM AUTHOR]

We examined the ability of MedisGroups, a severity measure based on clinical data abstracted from the medical record, to predict mortality 30 days following admission. MedisGroups measures severity both on admission and approximately one week into the hospital stay. The data base was a random sample of 20,985 admissions of Medicare beneficiaries with one of six conditions from 833 hospitals in seven states between January 1985 and May 1986. In all six conditions, higher admission and mid-stay severity scores were generally associated with higher risk of death. Across the six conditions, the R-squared values for predicting death using admission scores ranged from 0.01 to 0.16; R-squared values using mid-stay scores ranged from 0.03 to 0.34; and R-squared values from combining admission and mid-stay scores ranged from 0.05 to 0.41. Admission MedisGroups score was thus only modestly predictive of 30-day mortality. While the mid-stay score was more powerful, it may not be an appropriate severity adjuster to screen for quality using hospital mortality rates because it could be influenced by substandard care. [ABSTRACT FROM AUTHOR]

Administrative data result from administering health care delivery, enrolling members into health insurance plans, and reimbursing for services. The primary producers of administrative data are the federal government, state governments, and private health care insurers. Although the clinical content of administrative data includes only the demographic characteristics and diagnoses of patients and codes for procedures, these data are often used to evaluate the quality of health care. Administrative data are readily available, are inexpensive to acquire, are computer readable, and typically encompass large populations. They have identified startling practice variations across small geographic areas and supported research about outcomes of care. Many hospital report cards (which compare patient mortality rates) and physician profiles (which compare resource consumption) are derived from administrative data. However, gaps in clinical information and the billing context compromise the ability to derive valid quality appraisals from administrative data. With some exceptions, administrative data allow limited insight into the quality of processes of care, errors of omission or commission, and the appropriateness of care. In addition, questions about the accuracy and completeness of administrative data abound. Current administrative data are probably most useful as screening tools that highlight areas in which quality should be investigated in greater depth. The growing availability of electronic clinical information will change the nature of administrative data in the future, enhancing opportunities for quality measurement. [ABSTRACT FROM AUTHOR]

Comments on hospital mortality rates in the United States. Comparison of the mortality rates during the time of Florence Nightingale in 1863 and the rates in 1996; Policy context; Methodoligic context; Insights of the author regarding hospital mortality rates.