Disability and Health Journal最新文献

Background: Clinical trial protocols often allow investigators discretion to determine whether individuals are eligible to participate.

Objective: To examine the frequency and impact of discretionary eligibility criteria in oncology clinical trials, including whether they specifically target populations with psychiatric or cognitive disabilities for exclusion.

Methods: We identified interventional Phase III and Phase IV oncology clinical trials on ClinicalTrials.gov starting between January 1, 2019, and December 31, 2023. Among these, we included trials with at least one US location, patient populations aged 18-65 or 65+, and a posted study protocol. We used descriptive statistics to capture prevalence of broad investigator discretion in eligibility criteria. We reviewed statements concerning discretionary eligibility criteria for text relating to psychiatric or cognitive disability, and we applied qualitative content analysis techniques to identify themes.

Results: Ninety-six trials met inclusion criteria for this study. Of these, 82 (85.4 %) of trials allowed broad investigator discretion to determine eligibility. Content analysis revealed concerns about participants' safety (i.e., posing undue risk to patients), potential difficulties adhering to study protocols (e.g., because of patients' physical, psychiatric, or social condition), perceived ability to obtain informed consent, and completing assessments of patients to determine results of interventions. All trials required informed consent.

Conclusions: Most oncology clinical trials allow investigators broad discretion in determining the eligibility of individuals to participate. These discretionary criteria may particularly target persons with psychiatric or cognitive disabilities, excluding them from participating in clinical trials. Further research should examine whether certain rationales for excluding these populations are appropriate.

Background: Federal laws require healthcare organizations (HCOs) to provide patients' disability accommodations when requested. However, patients' accommodations needs are often unmet, contributing to inequities in healthcare access and outcomes. Little is known about the systems and processes HCOs use to provide accommodations in varied settings.

Objective: To understand HCOs' systems and processes to provide disability accommodations.

Methods: We conducted qualitative interviews with HCO representatives responsible for disability-related initiatives within their organizations. The interviews elicited participants' current processes for providing disability-related accommodations at their HCOs. We used a team-based approach to thematic analysis, reviewing and summarizing quotations to identify themes and categorize text that exemplified themes.

Results: We interviewed 17 participants representing 15 HCOs, and identified four themes related to HCOs providing disability accommodations: 1) Providing accommodations proactively begins with identifying a need, though is often disconnected from the rest of the process; 2) Clinical areas had varied and duplicative processes; 3) Different workflows were created ad hoc for different types of accommodations; and 4) Critical need to educate staff on disability accommodations. Participants drew parallels between disability accommodations and language interpreter services, and also emphasized the importance of providing disability accommodations in a proactive rather than reactive manner.

Conclusions: Health systems struggle with a lack of standardized processes to provide disability accommodations in an efficient, systematic way. While processes should be adapted to local contexts, standardized guidelines for providing accommodations could improve consistency in their delivery, ultimately helping to mitigate health-related disparities in the healthcare setting.

Background: The Cerebral Palsy Research Network (CPRN) community registry has yielded valuable information about changes in function and pain in adults with cerebral palsy (CP) through a patient-reported outcomes registry. However, it requires increased enrollment and diversity of participants to produce more generalizable conclusions.

Objective: To identify stakeholder perspectives about the barriers and facilitators to enrollment in the CPRN Community Registry, strategies to enhance recruitment efforts, and important questions for the registry.

Methods: Qualitative descriptive study using iterative focus groups, followed by inductive thematic analysis. Participants included adults with CP and caregivers, clinical investigators, and community leaders in the CP and disability spaces. Focus groups explored perspectives about motivations for registry participation, barriers and facilitators to participation, and strategies for increasing and enhancing diversity of enrollment.

Results: Four focus groups were conducted (20 participants with lived experience; 10 clinical investigators; 9 community leaders). All participants valued the information provided by the registry and felt that ongoing data collection was important. Barriers and related facilitators to participation include benefits of participation, awareness, accessibility, and collaboration with community and clinical partners. Adults with lived experience seek more precisely defined health and function outcomes for adults with CP.

Conclusions: Adults with lived experience, clinical investigators, and community leaders identified barriers and facilitators to participation in a patient-reported registry and important questions. This study revealed that communicating a direct benefit to the participant, improved visibility and accessibility, leveraging collaboration with clinical and community partners, and answering more precise research questions could promote enrollment.

Background: While the solid organ transplant evaluation process is designed to function equitably, discriminatory practices remain, resulting in disparities in access for persons with disabilities. Physical function and frailty status are often-cited factors in establishing transplant, despite limited consensus on their assessment and impact.

Objective: The purpose of this study was to describe how transplant healthcare professionals conceptualize the relationship between physical disability and transplant candidacy.

Methods: A convenience sample of multidisciplinary transplant was solicited to respond to an electronic survey between February and March 2024.

Results: Of the 126 professionals contacted, 43 participants responded, yielding a response rate of 34 %. The majority of participants (88 %) held contradictory views of physical disability as it relates to transplant candidacy (p = 0.049). Men were more likely to endorse awareness of bias when evaluating transplant candidates (p = 0.008). Professional discipline was significantly associated with perception of transplant process fairness, impact of bias, and interpretation of quality of life. Iterative thematic analysis revealed a propensity to conflate frailty with physical disability.

Conclusions: Multidisciplinary transplant professionals rarely endorsed overtly ableist sentiments. However, responses highlighted inconsistent, unclear, and at times contradictory conceptions of physical function and physical disability, which may contribute to disparate access to solid organ transplant for individuals with physical disability.

Background: The importance of health literacy in personal health management is widely recognised in the general population, yet remains poorly understood in some patient groups, including people with spinal cord injury or disorder (SCI/D).

Objectives: The systematic review had two objectives: (1) to determine the health literacy levels of individuals with SCI/D, and (2) to identify facilitators and barriers to developing health literacy in this group.

Methods: Seven databases (CINAHL, Embase, Emcare, ProQuest, PsycINFO, PubMed, and Web of Science) were searched from inception, with an updated search completed on January 21, 2025. Study quality was evaluated (QualSyst Checklist) and both quantitative and qualitative research narratively summarised by our research aims.

Results: Seven quantitative studies and one qualitative study (N = 2471 participants) published from 2005 to 2022 were included. All demonstrated good methodological rigour. Most participants reported having sufficient health literacy. Those with higher health literacy were more likely to have higher education and socio-economic advantage, and to experience better physical and mental health outcomes. Evidence regarding the role of SCI/D variables in developing health literacy capacity was limited.

Conclusions: Health literacy remains an under-researched topic in the SCI/D literature. Further studies are needed to examine how health literacy can impact health behaviours and overall health for this group. This research would also benefit from focusing on personal experiences of health literacy development.

Background: Inherited retinal diseases (IRDs) are a heterogeneous group of genetic disorders that progressively impair vision, affecting millions globally. Despite advancements in gene therapy, treatment options remain limited. The impact of IRDs on patients' psychological and social well-being, however, remains underexplored, especially in Asia.

Objective: This study investigates the lived experiences of working-age adults in Singapore with IRDs, focusing on how the condition influences their identity, social engagement, and coping mechanisms.

Methods: Following the traditions of Interpretative Phenomenological Analysis (IPA) and informed by the theories of biographical disruption and embodiment, semi-structured interviews were conducted with six adults (aged 21-65 years old) formally diagnosed with IRDs. Participants were recruited through a genetic eye service, and in-depth, one-on-one interviews explored the impact of diagnosis, occupational and social lives, coping strategies, and future outlook. Transcripts were analyzed to identify key experiential themes.

Results: Four major themes emerged: (1) Embodied Experience - Navigating a Shifting Relationship with the Body, (2) The Self in Flux - Redefining Identity and Purpose, (3) Social Negotiations - Visibility, Invisibility, and Stigma, and (4) Coping and Resilience - Strategies for Adapting to Uncertainty. Participants described ongoing negotiations of self-identity, perceived social stigma, and internal struggles with acceptance of their conditions, amidst their faltering visual abilities and blending efforts to adapt to progressive vision loss.

Conclusions: Vision loss profoundly affects individuals' bodies, identities and social engagement. The findings emphasize holistic care that incorporates genetic and psychological counseling, along with public education initiatives to reduce stigma and support individuals in maintaining their independence.

Background: Inherited retinal diseases (IRDs) are genetic conditions that typically cause vision loss in working-age adults, representing a unique hidden disability characterised by variable progression rates.

Objective: This qualitative study explored the lived experiences of adults in the early stages of IRDs, when vision loss is not outwardly apparent.

Methods: Semi-structured interviews were conducted with 15 individuals with IRDs (mean age 37 ± 17 years) with experiences of progressive vision loss in the last 10 years, exploring participants' experiences and challenges following their IRD diagnosis. Interviews were transcribed verbatim and analysed using thematic analysis method.

Results: Analysis yielded five overarching themes: 1) Adapting to the diagnosis: "The journey can be harder than the actual disease", describing challenges in coming to terms with the diagnosis. 2) Daily obstacles: "Accepting what I have, adapting where I can", describing lifestyle and behavioural changes to accommodate for changing vision. 3) A roller-coaster of emotions: "I feel like I'm not in control of the journey", highlighting emotional challenges managing the uncertainty of a variable, progressive disease. 4) Navigating society: "it's invisible, so people forget", capturing interpersonal challenges stemming from a hidden disability. 5) The road ahead: Finding an identity within uncertainty, describing struggles with identity and the future.

Conclusion: Beyond vision impairment, individuals with IRDs face numerous personal and interpersonal challenges due to the hidden nature of their disability. These challenges are not always immediately apparent, highlighting the importance of raising awareness to assist in developing targeted resources, diagnostic support, and broader societal understanding for hidden disabilities.

Background: Vaccination is a crucial strategy in responding to infectious diseases. We investigated the COVID-19 vaccination coverage among people with disabilities compared to people without disabilities. We identified risk factors of under-vaccination and vulnerable subgroups.

Objectives: To assess COVID-19 vaccination coverage in individuals with disabilities compared with individuals without disabilities and identify risk factors for under-vaccination.

Methods: This cross-sectional study analysed the Korea Disease Control and Prevention Agency-COVID-19-National Health Insurance Service (K-COV-N) cohort, which registered adults with disabilities in 2020 and age and sex-matched individuals without disabilities were included. Vaccination records from the rollout through March 31, 2022 were analysed. Multivariable ordinal logistic regression models were employed.

Results: This study included 4,811,866 participants after exclusions. Within the same disability type, individuals with severe disabilities had higher non-vaccination rates than those with mild disabilities. Individuals with pulmonary, brain and cardiac disabilities exhibited higher age-standardized non-vaccination rates (16.7 %, 15.1 % and 12.5 %, respectively). individuals with disabilities were more likely to be under-vaccinated than those without disabilities, with an adjusted odds ratio (aOR) of 1.01 (95 % CI 1.01-1.02). Females consistently exhibited a higher likelihood of non-vaccination in all subgroups. The impact of age differed based on the disability subgroups. The likelihood of under-vaccination was low in employee-insured individuals.

Conclusions: Individuals with disabilities were less likely to receive COVID-19 vaccination compared with those without disabilities and variations were observed by disability types. Tailored strategies considering identified risk factors are required to ensure equal vaccination access for individuals with disabilities in future pandemics.

Background: This article evaluates a role, the Long Term Services and Supports (LTS) Coordinator in a program (called One Care) for dually eligible individuals who have Medicare and Medicaid.

Objective: Examine the implementation of the LTS Coordinator role within the One Care demonstration project and assess its strengths and areas for improvement.

Methods: This study utilizes thematic analysis²⁵ and is informed by participatory action research¹⁹. One Care members (n = 27), LTS Coordinators (n = 4), and One Care health plans' staff members (n = 6) were recruited via convenience sampling. Semi-structured interviews were used for data collection.

Results: Participants felt supported and understood by their LTS Coordinators, which was helpful in combating isolation and loneliness. LTS Coordinators filled gaps in care related to social determinants of health. However, stakeholders had mixed understandings and definitions of the role of LTS Coordinators. Participants indicated the need for more resources for the LTS Coordinators.

Conclusions: The LTS Coordinator is a unique and innovative role in the One Care duals demonstration. The role of the LTS Coordinator can be strengthened by clarifying the LTS Coordinator role, integrating them within the care team, and improving training and compensation. The LTS Coordinator feature of One Care can serve as a model for other integrated care programs.