Bonnielin K. Swenor

Background: Hearing loss (HL) may be a risk factor for poor psychosocial outcomes among older adults, but evidence remains mixed. We assessed associations of self-reported and objective HL with and without hearing aid use with social contact, loneliness, and depression pooled across 6 years of follow-up. Methods: We studied 2049 Black and White adults from the Health, Aging, and Body Composition study aged 70-79 at recruitment. Self-reported HL and audiometric HL with and without hearing aid use were assessed at analytic baseline (Year 5, 2001-2002). Outcomes were frequency of contact with family and friends (<weekly vs. at least weekly), depressive symptoms (CESD-10), and loneliness (CESD-10 item “I felt lonely”) measured across 6 annual visits. Adjusted for demographic and clinical variables, we used generalized linear regression with generalized estimating equations to assess associations with outcomes pooled across six follow-up waves. Results: Self-reported HL (16%) was associated with more depressive symptoms (ß=0.13 SD; 95%CI:0.03,0.24), but no other outcome. Objective HL without hearing aid use (11%) was associated with infrequent contact with friends (OR=1.38; 95%CI:1.07,1.78) and more depressive symptoms (ß=0.19 SD; 95%CI:0.07,0.31); objective HL with hearing aid use (9%) was not associated with these outcomes. Objective HL, regardless of hearing aid use, was borderline associated with more frequent feelings of loneliness. Discussion: Objective HL without hearing aid use may be an important risk factor for isolation from friendship networks and depressive symptoms among older adults. Self-reported HL and objective HL with hearing aid use may also be linked to some adverse psychosocial outcomes.

Background: Structural ableism, defined as the processes, policies, and institutions that privilege able-bodied people over disabled people, is a root cause of health inequalities faced by the disability community. Unlike other forms of structural oppression, there are currently no adequate measurements for structural ableism and its impacts. Therefore, a necessary first step to addressing health inequities that impact the disability community is to create validated measures of structural ableism. Objective: This paper outlines the methods of an ongoing project that aims to develop and validate measures of structural ableism. The resulting measures will facilitate the identification of relationships between structural ableism and health outcomes at both an individual and community level. Methods: This project will take place across 3 phases. In Phase I, we will characterize the multiple factors that comprise the construct of structural ableism. We will begin by analyzing texts that discuss historical events, ideologies, and the lived experiences of disabled people to inform our understanding of contemporary dimensions of structural ableism. Simultaneously, key informant interviews with advocates and activists from the disability rights and disability justice movements will be conducted to further characterize the dimensions of structural ableism. In Phase II, the findings of Phase I will be used to inform the creation of an individual-level measure of structural ableism. Phase III will result in community-level measures of structural ableism, which will be developed using community-engagement studios with members of the disability community and publicly available datasets. This phase will build on the findings of the first 2 phases. Our methods purposefully include disabled people across all phases of this work, with a focus on maximizing the diversity of disability perspectives by including people across disability types and intersecting identities (eg, race and ethnicity, gender identity, geographic location, and other identities and demographics). Most importantly, our approach is deeply community-informed, drawing on multiple community partnerships from local and national organizations, a diverse advisory committee of disabled activists, advocates, and scholars, as well as researchers with expertise in developing measures of structural oppression, such as structural racism. Results: This project was funded in August of 2024. As of October 2025, our team has read more than 50 texts as part of our historical and policy analysis of the factors that characterize structural ableism. We plan to complete our characterization of structural ableism in the spring of 2026, with individual-level measures of structural ableism being developed by the Winter of 2028 and community-level measures created by the Winter of 2029. Conclusions: The measures developed by this work will lay the foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism, which should be cocreated with the disability community. International Registered Report Identifier (IRRID): DERR1-10.2196/86976

Objectives: People with disabilities are underrepresented in clinical trials, which impacts generalisability and ethical integrity of results. Despite international mandates to diversify participants, there is a lack of guidance on how to make trials disability-inclusive. This scoping review identifies and synthesises guidance, practices and recommendations supporting the inclusion of people with disabilities in clinical trials. Design: We conducted a scoping review following the Arksey and O'Malley framework and reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses for scoping reviews. Data sources: Medline (OVID) and Public Affairs Information System Index (October 2024) searches identified peer-reviewed articles. Grey literature was identified through targeted advanced Google searches and website reviews (February–March 2025). Google Scholar was searched to identify recently published documents between March and April 2025. Eligibility criteria for selecting studies: Documents with guidance or policies related to inclusion of people with disabilities in clinical trials published in English from 2019 to 2025 were included. Data extraction and synthesis: Two independent reviewers screened titles, abstracts and full texts and extracted data, with adjudication by a third reviewer. Results: A total of 69 documents met inclusion criteria. Thematic synthesis identified eight recommendation domains: (1) inclusive and universal trial design, (2) accessible recruitment, (3) inclusive data collection, (4) equitable data analysis, (5) accessible reporting and dissemination, (6) ethical oversight and institutional review board inclusion, (7) supported and accessible consent processes and (8) the inclusion of people with disabilities as researchers and stakeholders. Themes cutting across all domains included guidance emphasising universal design, anti-ableist frameworks, supported decision-making, flexible protocols and engagement with disability communities. Conclusion: Disability-inclusive clinical trials are essential to ensure the validity of clinical trial results, uphold ethical responsibilities and advance health equity. While emerging frameworks offer direction on how to include people with disabilities in trials, current implementation remains inconsistent and largely voluntary. Clear, enforceable standards are needed to support governments, ethics boards, institutions and funders in making clinical trials more disability-inclusive.

BACKGROUND Structural ableism, defined as the processes, policies, and institutions that privilege able-bodied people over disabled people, is a root cause of health inequalities faced by the disability community. Unlike other forms of structural oppression, there are currently no adequate measurements for structural ableism and its impacts. Therefore, a necessary first step to addressing health inequities that impact the disability community is to create validated measures of structural ableism. OBJECTIVE This paper outlines the methods of an ongoing project that aims to develop and validate measures of structural ableism. The resulting measures will facilitate the identification of relationships between structural ableism and health outcomes at both an individual and community level. METHODS This project will take place across 3 phases. In Phase I, we will characterize the multiple factors that comprise the construct of structural ableism. We will begin by analyzing texts that discuss historical events, ideologies, and the lived experiences of disabled people to inform our understanding of contemporary dimensions of structural ableism. Simultaneously, key informant interviews with advocates and activists from the disability rights and disability justice movements will be conducted to further characterize the dimensions of structural ableism. In Phase II, the findings of Phase I will be used to inform the creation of an individual-level measure of structural ableism. Phase III will result in community-level measures of structural ableism, which will be developed using community-engagement studios with members of the disability community and publicly available datasets. This phase will build on the findings of the first 2 phases. Our methods purposefully include disabled people across all phases of this work, with a focus on maximizing the diversity of disability perspectives by including people across disability types and intersecting identities (eg, race and ethnicity, gender identity, geographic location, and other identities and demographics). Most importantly, our approach is deeply community-informed, drawing on multiple community partnerships from local and national organizations, a diverse advisory committee of disabled activists, advocates, and scholars, as well as researchers with expertise in developing measures of structural oppression, such as structural racism. RESULTS This project was funded in August of 2024. As of October 2025, our team has read more than 50 texts as part of our historical and policy analysis of the factors that characterize structural ableism. We plan to complete our characterization of structural ableism in the spring of 2026, with individual-level measures of structural ableism being developed by the Winter of 2028 and community-level measures created by the Winter of 2029. CONCLUSIONS The measures developed by this work will lay the foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism, which should be cocreated with the disability community. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/86976

Disability measures currently used in U.S. federal surveys fail to identify many disabled people as such. This commentary summarizes empirical evidence regarding the underperformance of the American Community Survey six questions (ACS6) and Washington Group Short Set (WGSS) questions in measuring disability status. Building trust in science is a priority issue and necessitates greater transparency and communication about the limitations of these measures, both within research communities and among the public. Considering the underperformance of the ACS6 and WGSS in measuring disability status, we provide cautionary statements that researchers can use when including these measures in studies to ensure that interpretations of results are not overgeneralized to the disabled population.

Introduction: Current disability questions used in many US federal surveys exclusively measure disability as having 1 or more of 6 functional limitations. This strategy is at odds with who is disabled as some disabled people do not experience these limitations. Methods: Using data from a nationally representative survey of 2169 adults, this study describes the potential of a comprehensive disability status question to improve the measurement of disability. Results: Results from this study demonstrate that a comprehensive disability status question successfully identifies disabled people who both do, and do not, experience limitations. Conclusion: These findings suggest that a single comprehensive disability status question may provide a viable and more inclusive alternative to identifying the disabled population in US federal surveys.

Disabled people face social and environmental barriers to higher education, yet there is a dearth of clear, publicly available information on university websites related to accessibility and disability inclusion. Our team previously developed disability inclusion scores for the top 50 universities offering undergraduate programs based on funding from the National Institutes of Health (NIH) and found low scores overall. Building on that, this study examines the relationship between disability inclusion (as scores ranging from 0 to 100 points) and six university characteristics for these 50 universities. The six university characteristics examined were U.S. News National Universities 2021 rankings, geographic region, year of institution founding, total number of undergraduates, public or private status of the university, and presence of an undergraduate disability studies program. Results indicate that university characteristics were not significantly associated with disability inclusion scores (p>0.05 for all university characteristics). The average scores across all categories of each characteristic fell below 72 points. These results indicate a gap in disability inclusion across all types of universities examined. Highly funded universities should evaluate their campuses for disability inclusion.