Tailored vs. General COVID-19 prevention for adults with mental disabilities residing in group homes: a randomized controlled effectiveness-implementation trial.

BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA). METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections. RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03). CONCLUSION: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .

Cancer detection, diagnosis, and treatment for adults with disabilities.

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.

Dignity of Risk and Living at Home Despite Severe Disability.

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.

Associations Between Disability and Breast or Cervical Cancers, Accounting for Screening Disparities.

INTRODUCTION: Studies suggest that women with disability experience disparities in routine, high-value screening services, including mammograms and Papanicolaou (Pap) tests. However, few studies have explored whether women with disability have higher risks than other women of developing breast or cervical cancers. METHODS: The authors analyzed 2010, 2013, 2015, and 2018 National Health Interview Surveys, which involved civilian, noninstitutionalized US residents, and included supplemental surveys on cancer screening. The authors used self-reported functional status limitations to identify women without disability and women with movement difficulties (MDs) or complex activity limitations (CAL) predating breast or cervical cancer diagnoses. Multivariable models evaluated associations of disability status to cancer diagnosis, adjusting for other variables. Analyses used sampling weights, producing national estimates. RESULTS: The sample included 66,641 women; 24.4% reported MD and 14.5% reported CAL. Compared with women without disability, women with pre-existing MD or CAL had significantly higher rates of breast cancer (2.2% vs. 3.5% and 3.6%, respectively) and cervical cancer (0.6% vs. 0.8% and 1.0%, respectively). Women with disability had significantly lower recent mammography and Pap test rates than women without disability. After adjusting for all covariates, the values for odds ratio (95% confidence interval) of pre-existing CAL for cancer diagnoses were 1.21 (1.01-1.46; P=0.04) for breast cancer and 1.43 (1.04-1.99; P=0.03) for cervical cancer. CONCLUSIONS: Pre-existing disability is associated with a higher likelihood of breast and cervical cancer diagnoses, raising the urgency of eliminating disability disparities in mammography and Pap testing. Further research will need to explore the causes of these higher cancer rates.

Perspectives of Patients with Pre-existing Mobility Disability on the Process of Diagnosing Their Cancer.

BACKGROUND: Mobility disability is the most common disability among adult Americans, estimated at 13.7% of the US population. Cancer prevalence is higher among people with mobility disability compared with the general population, yet people with disability experience disparities in cancer screening and treatment. OBJECTIVE: We explored experiences of patients with mobility disability with the process of cancer diagnosis. DESIGN: Open-ended individual interviews, which reached data saturation. Interviews were transcribed verbatim for conventional content analysis. PARTICIPANTS: We interviewed 20 participants with pre-existing mobility disability that required the use of an assistive device or assistance with performance of activities of daily living and who were subsequently diagnosed with cancer (excluding melanoma). KEY RESULTS: Concerns coalesced around five broad categories: inaccessibility of medical diagnostic equipment affecting the process of cancer diagnosis, attitudes of clinical staff about accommodating disability, dismissal of cancer signs/symptoms as emotional responses to chronic health conditions, misattributing cancer signs/symptoms to underlying disability, and attitudes about pursuing legal action for substandard care. Participants provided examples of how erroneous assumptions and potentially biased attitudes among clinicians interfered with the process of their cancer diagnosis, sometimes contributing to an insufficient workup and diagnostic delays. CONCLUSIONS: Physical and attitudinal barriers affect the process of cancer diagnosis in people with mobility disability. Though people with mobility disability may be clinically complex, clinicians should be aware of the risks of diagnostic overshadowing (i.e., the misattribution of cancer signs/symptoms to underlying disability) and other erroneous assumptions that may affect timeliness of cancer diagnosis and quality of care. Further efforts, including educating clinicians about challenges in caring for persons with disability, should be considered to improve the process of cancer diagnosis for this population. TRIAL REGISTRATION: N/A.

Exploring attitudes about developing cancer among patients with pre-existing mobility disability.

OBJECTIVE: Mobility disability affects approximately 13.7% of the United States population, representing the most common disability type. People with mobility disability experience disparities in cancer screening and higher prevalence of some cancers compared to the general population. We sought to explore the attitudes of people with pre-existing mobility disability about their cancer diagnosis. METHODS: We conducted open-ended individual interviews with 20 participants who had pre-existing mobility disability requiring use of an assistive device or assistance with performance of activities of daily living (ADLs), subsequently diagnosed with cancer (excluding skin cancers). Interviews reached data saturation and were transcribed verbatim for conventional content analysis. RESULTS: Concerns coalesced around three major themes: sense of control over health conditions, seeking support, and recommendations for other people with disability seeking cancer care. Some participants described feeling a loss of control over their cancer diagnosis that they did not have regarding disability, while others suggested that disability presented greater challenges than their cancer diagnosis. Participants described seeking various forms of support, including emotional support (e.g., from friends and family), informational support (e.g., recommendations for seeking care), instrumental support (e.g., ADLs), and appraisal (e.g., self-reflection of personal qualities for fighting cancer). They provided recommendations, highlighting importance of self-advocacy and being attuned to changes in health status. CONCLUSIONS: We found that people with pre-existing mobility disability and cancer express complex attitudes towards their cancer diagnosis. Findings may inform efforts to improve quality of relevant supports to meet the psychosocial needs of this population.

Care Plans, Care Teams, and Quality of Life for People with Disabilities.

BACKGROUND: Massachusetts One Care was the first program approved among the Centers for Medicare & Medicaid Financial Alignment Demonstrations for dually eligible beneficiaries. The only program focusing on dually eligible beneficiaries ages 21-64, One Care espouses an independent living philosophy for persons with disabilities. Researchers engaged with enrollees to develop new measures of enrollee quality of life and health to understand changes experienced in this new model of care. OBJECTIVE: To examine whether enrollee knowledge of care plans and care teams predicts improvements in enrollee reported quality of life outcomes. DESIGN AND PARTICIPANTS: We engaged with people with disabilities to develop and implement a longitudinal survey in One Care in Massachusetts. This analysis presents the self-reported outcomes of a panel of 315 enrollees' experiences with key plan features in Massachusetts One Care enrollees. MAIN MEASURES: Knowledge of care plan, care team, and long-term services and supports (predictors); overall health, improved control, improved quality of health care, and improved hope for the future (outcomes). KEY RESULTS: Enrollee-reported knowledge of a care plan and a care team over 2 years of enrollment in Massachusetts One Care was associated with increased odds of reporting more control over health (OR 2.58, CI 1.33, 5.03), improved health care quality (OR 3, CI 1.27, 7.06), and overall health (OR 2.07, CI 1.05, 4.08). Access to new services or equipment to live independently was associated with increased odds of reporting all four positive outcomes, notably for improved perceptions of hope (OR 2.33, CI 1.56, 5.39), overall health (OR 5.03, CI 2.44, 10.39), and improved quality of care (OR 4.22, CI 1.85, 9.62). CONCLUSION: Engagement of persons with disabilities in care teams and care planning, as well as quality measurement, can improve their experiences of quality of life and health care.

Cross-Sectional Analysis of the Associations Between Four Common Cancers and Disability.

BACKGROUND: Approximately 61 million Americans have a disability. Little research has explored whether disability is associated with subsequent diagnosis of cancer, the second-leading cause of death in the United States. The objective of this study was to explore associations between cancer and disability, focusing on 4 cancers that may present with nonspecific symptoms that could be conflated with aspects of disability, thus delaying cancer diagnoses. An analysis of a nationally representative survey using sampling weights to produce national estimates was performed. METHODS: Civilian, noninstitutionalized US residents responding to the 2010-2017 National Health Interview Surveys totaling 259,392 Sample Adult Core survey respondents were included. We used self-reported functional status limitations to identify persons with movement difficulties (MD), complex activity limitations (CAL), and no disability. Multivariable regressions predicting cancer diagnosis included sociodemographic characteristics, tobacco use, body mass index, access to care indicators, and disability status. RESULTS: Persons with preexisting disability had significantly higher rates of cancer (ranging from 0.40 [SE, 0.05] for ovarian to 3.38 [0.14] for prostate) than did those without disability (0.20 [0.02] and 1.26 [0.04] for the same cancers; all P<.0001). Multivariable analyses found strong associations of preexisting MD and CAL with colorectal cancer, with adjusted odds ratios (aORs) of 1.5 (95% CI, 1.2-1.9) and 1.9 (1.5-2.4), respectively. For non-Hodgkin's lymphoma, the aOR for CAL was 1.5 (1.1-2.1). For prostate cancer, aORs for MD were 1.2 (1.0-1.3) and 1.1 (1.0-1.3) for CAL. Using cross-sectional survey data, we could only identify statistical associations, not causality. CONCLUSIONS: Our population-based analyses suggest that persons with disability may constitute a high-risk population, with higher cancer incidence. Optimizing appropriate screening and fully investigating new signs and symptoms are therefore critical for patients with disability.

Challenges of Developing a Natural Language Processing Method With Electronic Health Records to Identify Persons With Chronic Mobility Disability.

OBJECTIVE: To assess the utility of applying natural language processing (NLP) to electronic health records (EHRs) to identify individuals with chronic mobility disability. DESIGN: We used EHRs from the Research Patient Data Repository, which contains EHRs from a large Massachusetts health care delivery system. This analysis was part of a larger study assessing the effects of disability on diagnosis of colorectal cancer. We applied NLP text extraction software to longitudinal EHRs of colorectal cancer patients to identify persons who use a wheelchair (our indicator of mobility disability for this analysis). We manually reviewed the clinical notes identified by NLP using directed content analysis to identify true cases using wheelchairs, duration or chronicity of use, and documentation quality. SETTING: EHRs from large health care delivery system PARTICIPANTS: Patients (N=14,877) 21-75 years old who were newly diagnosed with colorectal cancer between 2005 and 2017. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Confirmation of patients' chronic wheelchair use in NLP-flagged notes; quality of disability documentation. RESULTS: We identified 14,877 patients with colorectal cancer with 303,182 associated clinical notes. NLP screening identified 1482 (0.5%) notes that contained 1+ wheelchair-associated keyword. These notes were associated with 420 patients (2.8% of colorectal cancer population). Of the 1482 notes, 286 (19.3%, representing 105 patients, 0.7% of the total) contained documentation of reason for wheelchair use and duration. Directed content analysis identified 3 themes concerning disability documentation: (1) wheelchair keywords used in specific EHR contexts; (2) reason for wheelchair not clearly stated; and (3) duration of wheelchair use not consistently documented. CONCLUSIONS: NLP offers an option to screen for patients with chronic mobility disability in much less time than required by manual chart review. Nonetheless, manual chart review must confirm that flagged patients have chronic mobility disability (are not false positives). Notes, however, often have inadequate disability documentation.

Ensuring the Reproductive Rights of Women with Intellectual Disability.

BACKGROUND: Women with intellectual disability experience disparities in sexual and reproductive health care services. METHODS: To explore perceptions of caring for persons with disability, including individuals with intellectual disability, we conducted open-ended individual interviews with 20 practicing physicians and three video-based focus group interviews with an additional 22 practicing physicians, which reached data saturation. Interviews were transcribed verbatim. We used conventional content analysis methods to analyse transcripts. RESULT: Physicians indicated that intellectual disability can pose challenges to providing sexual and reproductive health care. Observations coalesced around four themes: (1) communication; (2) routine preventive care; (3) contraception and sterilization; and (4) conception and parenthood. Observations raised concerns about equity of access to reproductive care for women with intellectual disability. CONCLUSIONS: In our sample of physicians, we found attitudes that might compromise reproductive care for women with intellectual disability, suggesting that gaps remain in ensuring reproductive rights of women with intellectual disability.

Communicating with Patients with Disability: Perspectives of Practicing Physicians.

BACKGROUND: Patient-centered care for people with disability requires effective communication and compliance with the Americans with Disabilities Act (ADA). OBJECTIVE: To understand physicians' perspectives on communication experiences with people with disability. DESIGN: Twenty semi-structured individual interviews. Interview recordings were transcribed verbatim for analysis. SETTING: Massachusetts, October 2017-January 2018. PARTICIPANTS: Twenty physicians ranging from 8 to 51 years in practice in primary care or 4 other specialties. MEASUREMENTS: Commonly expressed themes around communication with people with disability. RESULTS: Concerns coalesced around 4 broad categories: communication experiences with people who are deaf or hard of hearing, communication with people who are blind or have vision impairment, communication with people who have intellectual disability, and recommendations for improving communication. Although participants in this study reported various efforts to communicate effectively with patients with hearing or vision loss or intellectual disability, many gaps appear to remain, as well as instances where physicians' preferences run counter to patients' wishes and the ADA. Examples include physicians' preferences for remote, online sign language interpreters despite patients desiring in-person interpreters and suggesting that patients arrange for their own interpreters. Few educational materials are available in braille, and electronic medical records may not allow documents to be printed in large font for persons with low vision. Communicating with patients with intellectual disability raised particular concerns, with participants often preferring to interact with caregivers and minimal efforts to involve patients. CONCLUSIONS: Effective communication is necessary for ensuring the quality of health care for people with disability, and it is legally required under the ADA. Our results suggest that important gaps may remain in ensuring effective communication, and some practicing physicians could benefit from formal training in effective methods for communicating with patients with disability.

Accessibility of Medical Diagnostic Equipment for Patients With Disability: Observations From Physicians.

OBJECTIVE: To explore attitudes and practices of physicians relating to accessible medical diagnostic equipment in serving patients with mobility disability. DESIGN: Open-ended individual telephone interviews, which reached data saturation. Interview recordings were transcribed verbatim for qualitative conventional content analysis. SETTING: Massachusetts, the United States, October 2017-January 2018. PARTICIPANTS: Practicing physicians from 5 clinical specialties (N=20). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Common themes concerning physical accessibility. RESULTS: Mean ± SD time in practice was 27.5±12.5 years; 14 practices had height-adjustable examination tables; and 7 had wheelchair-accessible weight scales. The analysis identified 6 broad themes: height-adjustable examination tables have advantages; height-adjustable examination tables have drawbacks; transferring patients onto examination tables is challenging; rationale for examining patients in their wheelchairs; perceptions of wheelchair-accessible weight scales; and barriers and facilitators to improving physical accessibility. Major barriers identified by participants included costs of equipment, limited space, and inadequate payment for extra time required to care for persons with disability. Even physicians with accessible examination tables sometimes examined patients seated in their wheelchairs. CONCLUSIONS: Even if physicians have accessible equipment, they do not always use it in examining patients with disability. Future efforts will need to consider ways to eliminate these access barriers in clinical practice. Given small sample size, results are not generalizable to physicians nationwide and globally.

Service Animals in Health Care Settings.

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.

New Rules Requiring Accessible Medical Diagnostic Equipment-Updates to Section 504 Disability Civil Rights Regulations.

This Viewpoint reviews the history of mandates governing access to medical diagnostic equipment in Section 504 of the Rehabilitation Act of 1973 and reviews the new rules.

Revising NIH's Mission Statement to Remove Ableist Language.

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.

Calling on the USPSTF to Address Ableism and Structural Ableism.

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.

Labor, delivery, and anesthesia experiences of women with physical disability.

BACKGROUND: Although many women with physical disabilities report poor quality reproductive health care, little research has addressed labor, delivery, and anesthesia experiences of these women. This study was conducted to explore these experiences in women with significant mobility disabilities. METHODS: A qualitative descriptive study was conducted with 22 women from the United States who had delivered newborns within the prior 10 years. All had significant mobility disabilities. Two-hour, in-depth telephone interviews were conducted using a semistructured, open-ended interview protocol, which addressed many topics, including labor, delivery, and anesthesia experiences. We recruited most participants through social networks, interviewing women from 17 states. Conventional content analysis, facilitated by NVivo software, was used to identify major themes. RESULTS: The mean age of women was 34.8 ± 5.3 years. Most women were white, college educated, and used wheeled mobility aids. Four key themes emerged from participants' narratives of laboring and giving birth with a disability. These included women's preferences for type of delivery, clinicians and some women expected no labor pain, fears prompting active advocacy, and positive experiences. As participants discussed their experiences with anesthesia, four additional themes were identified: importance of consultation with the anesthesia team, decisions about epidural/spinal vs general anesthesia, failed epidural with repeated efforts, and fear of injury related to anesthesia. CONCLUSIONS: The responses of women in this study suggest that there is need to make intrapartum care better for women with physical disabilities and to improve their experiences with labor, birth, and obstetric anesthesia care.