Disability And Health Journal[JOURNAL]
Sun
200 papers
Feasibility and preliminary efficacy of a skill-based lifestyle intervention for enhancing cooking abilities and physical fitness in young adults with intellectual disabilities.
Danon JC, Koon L, Sherman JR … +5 more , Rice AM, Quaife S, Helsel BC, Bodde A, Ptomey LT
Disabil Health J · 2025 Apr · PMID 39648079 · Full text
BACKGROUND: Individuals with intellectual disabilities (ID) often experience poorer diet quality and lower physical fitness levels as they transition from adolescence to adulthood. OBJECTIVE: The purpose of this study wa...
BACKGROUND: Individuals with intellectual disabilities (ID) often experience poorer diet quality and lower physical fitness levels as they transition from adolescence to adulthood. OBJECTIVE: The purpose of this study was to assess the initial feasibility and efficacy of Chef-ID, a 12-week intervention designed to improve cooking skills and physical function in young adults with ID. METHODS: Young adults with ID attended weekly group sessions which provided hands-on cooking skills, nutrition education, and exercise. Participants were also asked to attend monthly, virtual, goal setting sessions. Feasibility outcomes included attendance, retention, and safety. Preliminary efficacy outcomes included cooking skills, lower body muscle strength, grip strength, aerobic capacity, and body weight. Paired t-tests were used to assess the differences in cooking skills, strength measures, aerobic capacity, and weight after the 12-week intervention. RESULTS: Study retention was 95 %, attendance exceeded 85 % for all sessions, and no serious adverse events were reported. The number of cooking skills participants could do independently (p = 0.005), the number of cooking skills requiring only a verbal prompt (p = 0.01) and lower body strength (p = 0.004) significantly improved across the 12-week intervention. The number of cooking skills participants had no exposure to (p = 0.01) and weight (p = 0.036) significantly decreased across the intervention. No significant changes were observed for upper body strength or aerobic capacity. CONCLUSIONS: The Chef-ID intervention was feasible with desirable initial effects on cooking skill independence, exposure to cooking skills, lower body strength, and weight. The Chef-ID intervention holds promise in enhancing cooking skills and physical function among young adults with ID. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov, NCT05385016.
Comparison of the prevalence of metabolic syndrome between individuals with spinal cord injury and the general population based on the cutoff values of abdominal obesity.
Lim J, Kim HJ, Kim O
Disabil Health J · 2025 Apr · PMID 39645463 · Publisher ↗
BACKGROUND: Metabolic syndrome (MetS) is a cluster of cardiovascular disease (CVD) risk factors. Accurate diagnosis, in spinal cord injury (SCI) patients, is vital for effective CVD prevention. OBJECTIVE: This study aime...
BACKGROUND: Metabolic syndrome (MetS) is a cluster of cardiovascular disease (CVD) risk factors. Accurate diagnosis, in spinal cord injury (SCI) patients, is vital for effective CVD prevention. OBJECTIVE: This study aimed to identify factors related to MetS prevalence by comparing MetS prevalence trends in SCI and the general population (GP) and to examine differences in MetS prevalence in patients with SCI according to the cutoff reference value for abdominal obesity. METHODS: This retrospective cohort study analyzed data from the National Health Insurance Corporation from 2015 to 2019. MetS was defined using the National Cholesterol Education Program criteria with an adjusted waist circumference of 81.3 cm for patients with SCI. Data were collected on age, gender, smoking, alcohol consumption, BMI, waist circumference, lipid profiles, blood pressure, fasting glucose, and socioeconomic status. Each year, SCI patients (n = 3,140, n = 3,201, n = 3,503, n = 1,590, n = 1544) were matched with GP individuals (m = 31,400, m = 32,040, m = 35,030, m = 15,900, m = 15,440). RESULTS: Over 5 years, MetS prevalence increased in both groups, consistently higher in the SCI group. Older age and lower income were risk factors in both groups (p < 0.05). Smoking and alcohol intake were significant only in the GP (p < 0.0001). Using the adjusted obesity criterion, MetS prevalence was 1.4 times higher in SCI patients than in the GP (p < 0.0001). CONCLUSIONS: Exclusively relying on GP criteria for diagnosing MetS in patients with SCI may lead to an underestimation of MetS prevalence and overlooked opportunities for CVD prevention. Therefore, the development of diagnostic and preventive strategies for MetS considering SCI characteristics is needed.
Natural disaster vulnerability among people with disabilities: Insights from the 2024 Household Pulse Survey.
Morales DX
Disabil Health J · 2025 Apr · PMID 39643524 · Publisher ↗
BACKGROUND: Natural disasters pose global challenges, with their frequency and severity increasing annually, impacting communities worldwide. People with disabilities are disproportionately vulnerable to experiencing adv...
BACKGROUND: Natural disasters pose global challenges, with their frequency and severity increasing annually, impacting communities worldwide. People with disabilities are disproportionately vulnerable to experiencing adverse mental health outcomes in the aftermath of such events, yet this critical issue remains inadequately studied. OBJECTIVE: This paper examines the impact of natural disasters on people with disabilities, focusing on their displacement patterns and mental well-being, to enhance our understanding of health vulnerabilities and the specific needs in emergency response. METHODS: Data from the nationally representative 2024 Household Pulse Survey were analyzed to assess the duration of displacement and the severity of mental distress among individuals with and without disabilities following natural disasters. Generalized Estimating Equations were employed to predict post-disaster outcomes, adjusting for demographic characteristics, socioeconomic factors, and household structure. RESULTS: Individuals with vision disabilities (CI: 0.024-0.137) and those with multiple disabilities (CI: 0.020-0.068) experienced significantly longer periods of displacement compared to non-disabled people. Additionally, people with cognitive disabilities reported significantly higher levels of mental distress than their non-disabled counterparts (CI: 0.149-0.236). CONCLUSION: Findings from this study demonstrate the need for specialized disaster response protocols that prioritize accessibility, mental health support, and targeted assistance for different disability types. Future emergency preparedness policies should incorporate disability-specific considerations, including enhanced evacuation planning, accessible mental health services, and strengthened community support systems. Disaster response frameworks must evolve to address these documented vulnerabilities, ensuring equitable support for all community members during and after natural disasters.
Intersectional inequities in maternal mortality: Examining the compounded risks for black birthing individuals with physical disabilities.
Akobirshoev I, Jerome S, Snowden JM … +4 more , Slaughter-Acey J, Valentine A, Horner-Johnson W, Mitra M
Disabil Health J · 2025 Apr · PMID 39643523 · Full text
BACKGROUND: People who are Black and have physical disabilities likely face a dual burden of risk for maternal mortality due to enduring systemic oppression rooted in racism and ableism. OBJECTIVE: To investigate materna...
BACKGROUND: People who are Black and have physical disabilities likely face a dual burden of risk for maternal mortality due to enduring systemic oppression rooted in racism and ableism. OBJECTIVE: To investigate maternal mortality risks among Black birthing individuals with physical disabilities in the United States and assess the potential compounding effect when these marginalized identities intersect. METHODS: We conducted a historical cohort study using the 2004-2021 Healthcare Cost and Utilization Project Nationwide Inpatient Sample. The study included 8,263,997 delivery hospitalizations. We used modified Poisson regression to estimate unadjusted and adjusted relative risks (RR) of maternal mortality by race and physical disability status. We calculated the Relative Excess Risk due to Interaction (RERI) and Attributable Proportion (AP) to assess additive interaction between Black race and physical disability status. RESULTS: After adjusting for covariates, compared to their White birthing individuals, their Black peers experienced about 2.5 times (RR = 1.48,95%CI:2.08-2.96) the risk of maternal mortality. Compared to birthing individuals without physical disabilities, those with physical disabilities experienced nearly 11 times the (RR = 10.72,95%CI:8.15-14.10) risk of maternal mortality. Our adjusted additive interaction analysis revealed a significant super-additive effect (RERI = 11.3; AP = 0.47); suggesting that the combined effect of having both marginalized identities was greater than the sum of the individual effects of each identity. CONCLUSIONS: Our findings provide evidence for substantial inequities in maternal mortality by Black race and physical disability status, with evidence of a compounding effect when these marginalized identities intersect. These results underscore the urgent need for intersectional approaches in maternal health interventions and policies.
Rural disability, self-reliance, and the utilization of mental health services.
Santore L, Ipsen C, Gimm G
Disabil Health J · 2025 Apr · PMID 39613679 · Publisher ↗
BACKGROUND: The intersection of rurality, disability, self-reliance values, and utilization rates of mental health services (MHS) is under-researched. OBJECTIVE: To better understand the differences between unmet need an...
BACKGROUND: The intersection of rurality, disability, self-reliance values, and utilization rates of mental health services (MHS) is under-researched. OBJECTIVE: To better understand the differences between unmet need and no perceived need for MHS between noncore, micropolitan, and metropolitan adults with disabilities. METHODS: We conducted logistic regression analyses of the 2022 National Survey on Health and Disability (NSHD) to identify associations between demographic characteristics and odds of reporting unmet need for MHS or no perceived need for MHS. RESULTS: Living in a noncore area, being male, lower educational attainment, older age, vision disability, and ambulatory disability were significantly associated with increased odds of reporting no perceived need for MHS. Being LGBTQIA+, poor transportation access, and cognitive disability were significantly associated with decreased odds of reporting no perceived need for MHS. Cognitive disability, cohabitation, and poor transportation access were significantly associated with increased odds of reporting unmet need for MHS. Conversely, being male, having some college and/or a two-year degree were significantly associated with decreased odds of reporting unmet need for MHS. There were not significant differences in unmet need for MHS across rural indicators. CONCLUSION: No perceived need of MHS is an underexplored factor among rural and urban adults with disabilities. Solutions include policies to expand MHS access, tailored public health outreach, and provider communication training.
How does the environmental inadequacy mediate the effect of functional limitations on participation restrictions in young adults with cerebral palsy?
Perret C, Ehlinger V, Shourick J … +5 more , Alvarelhão JJM, Himmelmann K, Delobel-Ayoub M, Vidart d'Egurbide Bagazgoïtia N, Arnaud C
Disabil Health J · 2025 Apr · PMID 39609147 · Publisher ↗
BACKGROUND: Adults with cerebral palsy (CP) face various functional limitations and comorbidities, that prevent them from participating fully in social life. Disability models suggest that an environment not tailored to...
BACKGROUND: Adults with cerebral palsy (CP) face various functional limitations and comorbidities, that prevent them from participating fully in social life. Disability models suggest that an environment not tailored to their needs could partly explain the link between functional limitations and participation restrictions. However, there is still insufficient knowledge about how the environment hinders participation. OBJECTIVE: To investigate the mediating role of environmental inadequacy in the relationship between functional limitations and participation restrictions in young adults with CP. METHODS: Cross-sectional study, which included 310 young adults with CP, aged 22-27 years at interview (2018-2020) and recruited in well-defined geographical areas in France, Germany, Italy, Portugal and Sweden. Environmental inadequacy was assessed using the EAEQ and participation restrictions using the QYPP-YA. A theorical model was tested with a partial least squares structural equation model. RESULTS: Functional limitations had a significant direct effect on participation restrictions (β = 0.62, p < 0.001). A small part of the total effect was mediated by the "inadequacy of services, systems and policies" environmental latent variable (β = 0.10, p < 0.001). "Inadequacy of support and relationships" and "inadequacy of attitudes" environments demonstrated no mediating effect. Unexpectedly, a higher "inadequacy of products and technology" environmental score appeared to reduce participation restrictions (β = -0.10, p = 0.025). CONCLUSIONS: The environment considered as suggested by the ICF had only a minimal mediating effect in our study. However, public health policies must give priority to improvements at the macro-environmental level, particularly in terms of availability and access to the "services, systems and policies".
Examining the impact of the COVID-19 pandemic among staff and consumers at Florida centers for independent living.
Allen-Mitchell A, Stetten NE, Basaria K … +2 more , Cox L, Marlow NM
Disabil Health J · 2025 Apr · PMID 39586761 · Publisher ↗
BACKGROUND: People with disabilities (PWD) face health disparities due to barriers that limit their access to essential healthcare services. During the COVID-19 pandemic, health disparities among PWD increased as stay-at...
BACKGROUND: People with disabilities (PWD) face health disparities due to barriers that limit their access to essential healthcare services. During the COVID-19 pandemic, health disparities among PWD increased as stay-at-home mandates and other safety measures interrupted access to healthcare and social services. Community-based and consumer-driven Centers for Independent Living (CILs) attempt to reduce disparities faced by PWD by providing information and referrals, peer counseling, and advocacy. OBJECTIVE: Despite funding to utilize public health workers to respond to the COVID-19 pandemic and prepare for future crises, the literature currently lacks examinations of the impact of the COVID-19 pandemic on CIL consumers and staff. METHODS: This qualitative study employed a directed content analysis to evaluate 6 consumer focus groups (N = 35) and 4 staff focus groups (N = 14). RESULTS: Through data analysis, staff themes included Resource Gaps, COVID-19 Concerns, Impact on Independence, Impact on Health, Work Demand Changes, and Work/Life Balance. Among consumers, themes of CIL Service Experiences, CIL Benefits, COVID-19 Concerns of Using CILs, COVID-19 Barriers to Using CILs, Impact on Independence, Impact on Health, Resource Gaps, and Recommendations for CILs were present. CONCLUSIONS: This study demonstrates the diverse experiences among PWD during the COVID-19 pandemic. However, there are similarities in the impact of environmental factors on the severity of disability experienced by consumers and staff. This study highlights the benefits of independent community living resource centers and the need to better understand the experiences of PWD to prepare for future pandemics.
Exhibiting lived experiences of disability in a hospital workplace: A qualitative evaluation.
Worthington NM, Grainger C
Disabil Health J · 2025 Apr · PMID 39572281 · Publisher ↗
BACKGROUND: Beyond the Stigma (BTS) was an exhibition of stories about staff with physical and hidden impairments at the Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK. OBJECTIVE: Evaluative research aim...
BACKGROUND: Beyond the Stigma (BTS) was an exhibition of stories about staff with physical and hidden impairments at the Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK. OBJECTIVE: Evaluative research aimed to examine BTS's long-term impact on participants who publicly shared lived experiences of disability in their hospital workplace. It also sought to discover how arts-based interventions can effectively identify and promote nuanced disability understandings and the wellbeing of disabled people working in healthcare. METHODS: Interpretative Phenomenological Analysis (IPA) interviews were conducted with six hospital staff. Transcripts were analyzed in depth. RESULTS: Three superordinate themes emerged from the data, Process of Hesitancy and Comfort, Perceptions of Impact and Contribution, and Journeying with Disability Understandings. These captured personal narratives of how it felt to disclose impairment and perceptions of the project's impact. Long-term benefits of taking part in BTS were identified as increased self-confidence, openness, self-acceptance, and empowerment. Shifts in participants' personal disability views pointed to improved quality of life inside and outside the workplace through new awareness of diverse and shared experiences, new ease with disability definitions, language, self-identity, and community participation. CONCLUSION: Study findings exposed levels of risk, resilience, and compromise associated with sharing personal experiences of disability, and how these can be managed effectively in the workplace. BTS offers a model for health promotion and community participation across disabled and non-disabled communities that can be repeated and adapted to support employment strategies, shift understandings, and promote notions of disability gain and disability pride across healthcare settings.
Intellectual disabilities and risk of cardiovascular diseases: A population-based cohort study.
Cho IY, Koo HY, Um YJ … +4 more , Park YM, Kim KM, Lee CE, Han K
Disabil Health J · 2025 Apr · PMID 39562242 · Publisher ↗
BACKGROUND: While intellectual disability is associated with higher mortality rates due to circulatory diseases, it is unclear whether intellectual disability is associated with higher risk of myocardial infarction (MI)...
BACKGROUND: While intellectual disability is associated with higher mortality rates due to circulatory diseases, it is unclear whether intellectual disability is associated with higher risk of myocardial infarction (MI) and stroke than the general population. OBJECTIVES: We aimed to analyze the risk of cardiovascular diseases (CVD), specifically myocardial infarction (MI) and ischemic stroke, and death due to circulatory diseases in individuals with disability. METHODS: This retrospective cohort study used data from the National Disability Registration System linked to the Korean National Health Insurance Service database. Individuals who underwent national health examinations in 2009 were followed until 2020. Cox-proportional hazard analyses were performed to estimate the risk of CVD, MI, ischemic stroke, and circulatory disease deaths with adjustment for covariates. RESULTS: A total of 3642 individuals with intellectual disability (mean [SD] age 39.1 [12.6], 28.8 % female) and 3,889,794 individuals without intellectual disability (mean [SD] age 47.1 [13.9], 45.6 % female) were included. Compared to those without intellectual disability, those with intellectual disability had higher risk of CVD (adjusted hazard ratio [aHR] 1.71, 95 % confidence interval [CI] 1.45-2.02), ischemic stroke (aHR 2.21, 95 % CI 1.81-2.69), and death due to circulatory diseases (aHR 4.20, 95 % CI 3.24-5.45), and a non-significant risk for MI (aHR 1.24, 95 % CI 0.95-1.63) after full adjustment for covariates. CONCLUSIONS: Individuals with intellectual disability were at increased risk of CVD, in particular ischemic stroke, and death due to circulatory diseases. Healthcare professionals should be aware of increased CVD risk in individuals with intellectual disability.
Disability and intimate partner violence experience among women in rural Samoa: A cross-sectional analysis.
Lowe H, Utumapu MF, Tevaga P … +2 more , Ene P, Mannell J
Disabil Health J · 2025 Apr · PMID 39550297 · Publisher ↗
BACKGROUND: Women with disabilities experience higher rates of intimate partner violence (IPV). Evidence suggests this violence often manifests in more subtle and severe forms over longer periods of time. There is limite...
BACKGROUND: Women with disabilities experience higher rates of intimate partner violence (IPV). Evidence suggests this violence often manifests in more subtle and severe forms over longer periods of time. There is limited evidence on this association in the Pacific Islands region, despite facing one of the highest global prevalences of IPV. OBJECTIVE: Examine the prevalence of disability and the association between disability and types of IPV experience among women in rural Samoa as part of the EVE Project. METHODS: This study analysed cross-sectional data collected with nine communities in rural Samoa between December 2022 and February 2023. Enumerators collected data with 707 women on tablets using REDCap. IPV was measured using the standardised Demographic and Health Survey (DHS) domestic violence methodology. Disability was assessed using the Washington Group questions. Logistic regression was conducted to examine the association between disability and experiences of IPV (physical, sexual, emotional and economic violence) among women. RESULTS: Having a disability was significantly associated with increased IPV experience among women in this study. When controlling for age and education, women with severe disability were significantly more likely to experience sexual (OR 4.31; p = 0.01) and emotional (OR 2.87; p = 0.02) IPV, when compared to women with no disability. CONCLUSIONS: Our findings point towards a greater vulnerability of women with disabilities to IPV, and particularly sexual and emotional IPV, in rural Samoa. Qualitative research in partnership with women with disabilities is essential to inform the design of measurement tools and prevention programmes that are grounded in the context-specific experiences and needs of all women with disabilities.
Exploring the physical, psychological, and social benefits of adaptive outdoor cycling in persons with stroke using a mixed methods approach.
Terrill AL, Kirby AV, Nagata N … +2 more , Bell S, Edgley S
Disabil Health J · 2025 Apr · PMID 39550296 · Publisher ↗
BACKGROUND: Stroke is a leading cause of disability world-wide. Community-based adaptive recreation programs may offer a way to enhance quality of life in persons with stroke. OBJECTIVE: Explore the association between c...
BACKGROUND: Stroke is a leading cause of disability world-wide. Community-based adaptive recreation programs may offer a way to enhance quality of life in persons with stroke. OBJECTIVE: Explore the association between community-based adaptive outdoor cycling program participation and physical, psychological, and social outcomes in persons with stroke using both quantitative and qualitative data collection. METHODS: Mixed methods design, using prospective longitudinal quantitative data collection during a 16-week adaptive outdoor cycling program (Part 1) and a semi-structured interview/focus group (Part 2). Part 1 included baseline, 8- and 16-weeks assessments of physical, psychological, and social outcomes. Repeated measures analyses of variance (ANOVA) were used to examine within-group changes and effect sizes were calculated. Part 2's transcriptions were coded for physical, psychological, and social outcomes. RESULTS: 30 individuals post-stroke (ages 25-72) were enrolled in Part 1 of the study. ANOVA results showed statistically significant changes in all three areas: physical (resting heart rate, 10-m walk test), psychological (well-being), and social (satisfaction with social roles) outcomes, all with large effect sizes. All other outcomes showed changes in the expected direction but did not reach statistical significance. Findings from qualitative analyses explained and expanded upon quantitative findings. CONCLUSIONS: The results highlight the importance of exploring the influence of adaptive recreation on not only physical but psychological and social outcomes. Due to the exploratory design of this pilot, future research is warranted.
History and future directions of DHJO.
Turk MA, Mitra M
Disabil Health J · 2025 Jan · PMID 39542787 · Publisher ↗
Abstract loading — click title to view on PubMed.
Self-reported compliance with infection prevention and control of healthcare workers in Dutch residential care facilities for people with intellectual and developmental disabilities during the COVID-19 pandemic: A cross-sectional study.
Houben F, den Heijer CD, Dukers-Muijrers NH … +5 more , Nava JB, Theunissen M, van Eck B, Smeets-Peels C, Hoebe CJ
Disabil Health J · 2023 Oct · PMID 39492010 · Publisher ↗
BACKGROUND: Compliance of healthcare workers (HCWs) with infection prevention and control (IPC) is crucial to resident safety. Nevertheless, HCWs' compliance with IPC has not been previously studied in a disability care...
BACKGROUND: Compliance of healthcare workers (HCWs) with infection prevention and control (IPC) is crucial to resident safety. Nevertheless, HCWs' compliance with IPC has not been previously studied in a disability care setting. OBJECTIVE: To assess levels of self-reported compliance with IPC among HCWs in residential care facilities (RCFs) for people with intellectual and developmental disabilities (IDDs), and to assess whether IPC compliance varies among different professional groups. METHODS: A total of 285 HCWs from 16 Dutch RCFs completed an online questionnaire assessing 16 IPC procedures, following national guidelines. Data were analysed using descriptive statistics and chi-square tests to assess potential differences in compliance between professional groups. RESULTS: Overall, HCWs complied on average with 68.7% of IPC. Only 30.1% of HCWs had sufficient compliance (defined as compliance with ≥80% of IPC practices). Compliance varied considerably between individual IPC procedures, in which compliance with wearing short-sleeved clothes (30.9%) and using disposable protective clothing (32.7%) were the lowest. Compliance with jewellery and hair regulations was suboptimal (45.6% and 55.4%, respectively). Non-medical professionals complied with IPC less frequently (social workers, 24.2%; behavioural specialists, 12.9%) than medical professionals (47.4%) (p < 0.001). CONCLUSIONS: The majority of HCWs had suboptimal compliance with IPC. As IPC compliance differs between professionals, recommendations are to 1) implement tailored education and training programmes, and 2) pursue a facility-wide minimum required IPC compliance. Implementing and communicating a minimum set of IPC procedures - including hand hygiene, personal hygiene, and clothing requirements - applying to all professionals is important to minimise the infection transmission risk in RCFs for people with IDDs.
One-year employment outcome prediction after traumatic brain injury: A CENTER-TBI study.
Van Deynse H, Cools W, De Deken VJ … +5 more , Depreitere B, Hubloue I, Tisseghem E, Putman K, CENTER-TBI Collaborators
Disabil Health J · 2025 Apr · PMID 39482193 · Publisher ↗
BACKGROUND: Traumatic brain injury (TBI) can come with long term consequences for functional outcome that can complicate return to work. OBJECTIVES: This study aims to make accurate patient-specific predictions on one-ye...
BACKGROUND: Traumatic brain injury (TBI) can come with long term consequences for functional outcome that can complicate return to work. OBJECTIVES: This study aims to make accurate patient-specific predictions on one-year return to work after TBI using machine learning algorithms. Within this process, specific research questions were defined: How can we make accurate predictions on employment outcome, and does this require follow-up data beyond hospitalization? Which predictors are required to make accurate predictions? Are predictions accurate enough for use in clinical practice? METHODS: This study used the core CENTER-TBI observational cohort dataset, collected across 18 European countries between 2014 and 2017. Hospitalized patients with sufficient follow-up data were selected for the current analysis (N = 586). Data regarding hospital stay and follow-up until three months post-injury were used to predict return to work after one year. Three distinct algorithms were used to predict employment outcomes: elastic net logistic regression, random forest and gradient boosting. Finally, a reduced model and corresponding ROC-curve was created. RESULTS: Full models without follow-up achieved an area under the curve (AUC) of about 81 %, which increased up to 88 % with follow-up data. A reduced model with five predictors achieved similar results with an AUC of 90 %. CONCLUSION: The addition of three-month follow-up data causes a notable increase in model performance. The reduced model - containing Glasgow Outcome Scale Extended, pre-injury job class, pre-injury employment status, length of stay and age - matched the predictive performance of the full models. Accurate predictions on post-TBI vocational outcomes contribute to realistic prognosis and goal setting, targeting the right interventions to the right patients.
A year of disability health equity milestones: Why disability data is still needed.
Landes SD, Swenor BK
Disabil Health J · 2025 Apr · PMID 39477755 · Publisher ↗
Three milestone disability health equity related decisions occurred between September 2023 and May 2024. Though each is to be celebrated in its own right, the continued failure to collect and/or limitations with disabili...
Three milestone disability health equity related decisions occurred between September 2023 and May 2024. Though each is to be celebrated in its own right, the continued failure to collect and/or limitations with disability data block the path to achieving disability health equity in the US.
Patient-provider relationships and long COVID: A cross-sectional survey about impact on quality of life.
Guidry JPD, Laestadius LI, Burton CW … +6 more , Miller CA, Perrin PB, Campos-Castillo C, Chelimsky T, Gharbo R, Carlyle KE
Disabil Health J · 2025 Apr · PMID 39472233 · Publisher ↗
BACKGROUND: In the United States (U.S.), it is estimated that 17.6 % of adults have experienced Long COVID, a condition where symptoms newly develop and linger after initial COVID-19 infection. Long COVID is associated w...
BACKGROUND: In the United States (U.S.), it is estimated that 17.6 % of adults have experienced Long COVID, a condition where symptoms newly develop and linger after initial COVID-19 infection. Long COVID is associated with significantly reduced quality of life (QoL), and patient-provider relationships have been shown to influence QoL for patients in general. OBJECTIVE: The objective for this study was to better understand the role of patient-provider relationships in shaping QoL among U.S. adults with Long COVID. METHODS: This study carried out an online survey among U.S. adult with Long COVID (N = 792). RESULTS: Respondents with at least a bachelor's degree reported higher QoL, and older respondents were more likely to report lower QoL; trust in providers was a significant predictor of higher QoL, while dismissal of Long COVID symptoms was associated with lower QoL (all p < .05). CONCLUSIONS: Healthcare providers should be aware of the importance of trust in the relationship with their Long COVID patients and the impact this may have on patients' QoL. Researchers and policy makers should include an increasing focus on training for providers who treat patients with Long COVID in order to strengthen patient-provider relationships.
The intersection of systemic lupus erythematosus with social and occupational environments among black adults: A qualitative study.
Aboul-Hassan D, Summerville J, Yalavarthi B … +8 more , Farahani N, Yu C, Xiao LZ, Rajgarhia S, Clauw DJ, Kahlenberg JM, DeJonckheere M, Bergmans RS
Disabil Health J · 2025 Apr · PMID 39467725 · Full text
BACKGROUND: Black people have disproportionately high morbidity and mortality due to systemic lupus erythematosus (SLE). Features of social and occupational environments can protect against poor health outcomes. OBJECTIV...
BACKGROUND: Black people have disproportionately high morbidity and mortality due to systemic lupus erythematosus (SLE). Features of social and occupational environments can protect against poor health outcomes. OBJECTIVE: We aimed to characterize how SLE intersects with interpersonal relationships and employment among Black adults to inform tailored care approaches and public policies that could alleviate racial inequities in SLE. METHODS: We used a qualitative, interpretive description approach that involved semi-structured interviews with Black adults who had SLE. The interview guide included questions about SLE diagnosis, impacts on day-to-day life, and symptom management. We analyzed the de-identified transcripts using inductive, thematic analysis with input from representatives of the study population. Our theme development focused on how SLE (i.e., symptoms, severity, management) intersected with interpersonal relationships and employment. RESULTS: This study included 30 interviews (97 % female, age range = 18-65 years). Among participants, 30 % were not working due to unemployment or disability and 23 % reported a lack of emotional support. Our analysis resulted in three main themes: 1) The bi-directional relationship between employment and SLE; 2) The positive and negative effects of connecting with other people who have SLE; and 3) The moderating role of relationships with family and friends, and the impact on self-identity. CONCLUSIONS: This study describes features of social and occupational environments that influence SLE management and wellbeing. Our results highlight directions for further study that could identify and address how systemic racism affects race-based inequities in SLE.
"Too few, too far away, for what is paid": Consumer voices about the personal assistance worker crisis.
Ipsen C, Sage R, Standley K
Disabil Health J · 2025 Apr · PMID 39448356 · Full text
BACKGROUND: The growing gap between demand and supply of personal assistance service (PAS) workers presents a significant burden to those who use services. The intensity and duration of hardship is growing, and consumer...
BACKGROUND: The growing gap between demand and supply of personal assistance service (PAS) workers presents a significant burden to those who use services. The intensity and duration of hardship is growing, and consumer voices need to be heard and incorporated into the national dialogue. OBJECTIVE: This paper explores how PAS worker shortages manifest themselves in the daily lives of people with disabilities using or needing PAS services in the United States. METHODS: We used thematic coding of qualitative data from the 2022 National Survey on Health and Disability. Respondents (n = 330) provided open-ended responses to the prompt "Briefly explain the types of problems or issues you have had finding PAS or support workers." RESULTS: Three themes emerged regarding consumer perspectives and experiences with worker shortages (1) low pay, few benefits, and undervalued work, (2) demanding working conditions and logistics, and (3) low quality workers. In combination, these themes informed a fourth theme (4) impacts for PAS consumers characterized by substandard care and additional stress and workload for those who direct their own care. CONCLUSIONS: As a society, we have taken steps to increase opportunities for community living and created policies to uphold choice and independence for people with disabilities. In the absence of an adequate workforce to support these policies, however, we convey an empty promise. Without tangible steps to resolve these problems at the policy level, such as improved worker pay and protections, hope for resolution to these issues remains elusive.
Providing accessible health information for people with disability in a public health crisis: A qualitative study of the experiences of Australian accessible information provider organizations during the COVID-19 pandemic.
Meltzer A, Barnes E, Wehbe A
Disabil Health J · 2025 Apr · PMID 39438240 · Publisher ↗
BACKGROUND: During the COVID-19 pandemic, people with disability had a right and an acute need to access accessible COVID-19 information, in formats such as sign language, Braille, large print and Easy Read/English. Yet...
BACKGROUND: During the COVID-19 pandemic, people with disability had a right and an acute need to access accessible COVID-19 information, in formats such as sign language, Braille, large print and Easy Read/English. Yet such information was not always provided and many people with disability were without sufficient accessible information. OBJECTIVE: This paper explores the experiences of Australian accessible information provider organizations of producing accessible information during the pandemic. The intent is to understand why insufficient accessible information reached people with disability. METHODS: In-depth interviews were conducted with 17 accessible information provider organizations and one other stakeholder in Australia, and thematically analyzed. RESULTS: The findings show that accessible information provider organizations felt an immense depth and breadth of responsibility for providing accessible information to people with disability during the pandemic. However, they were hampered by constantly changing information; workforce challenges; and a lack of financial, logistic and partnership assistance. Other notable difficulties included having no source of clear/accurate information to translate to accessible formats and not having medical/health expertise themselves. CONCLUSION: The findings have implications for better preparation for accessible information access in future public health crises. There should be greater funding and logistic support for accessible information provider organizations. Provision of clear/accurate information and subject matter checks of accessible products would be helpful. Responsibility for this should be scoped into existing outreach, education and communications roles - for example, in local health services, general practice clinics and government health departments.
Health disparities and injection drug use behaviors among adults with and without disabilities in the National Survey on drug use and health, 2015-2019.
Abadie R, Cano M
Disabil Health J · 2025 Jan · PMID 39406647 · Publisher ↗
BACKGROUND: Little is known about the prevalence of injection drug use in people with disabilities (PWD) when compared by disability type and to other adults without disabilities. OBJECTIVE OR HYPOTHESIS: The prevalence...
BACKGROUND: Little is known about the prevalence of injection drug use in people with disabilities (PWD) when compared by disability type and to other adults without disabilities. OBJECTIVE OR HYPOTHESIS: The prevalence of past-year injection drug use will be higher in adults with a reported disability than adults without any reported disability. METHODS: This study consisted of secondary analyses of data from the 2015-2019 National Survey of Drug Use and Health. The analytic sample comprised 214,505 US adults. Self-reported past-year injection drug use represented the outcome of interest. Disability status and socioeconomic characteristics were conceptualized as predictors, and sex and age were used as controls. RESULTS: Past-year prevalence of self-reported injection drug use was 0.24 % (95 % CI, 0.22-0.27) in adults without a disability but 0.66 % (95 % CI, 0.59-0.73) in adults with a disability. All disability types examined were associated with increased odds of reporting past-year injection drug use, but the strongest association was observed for disability related to difficulty concentrating (AOR, 4.90; 95 % CI, 3.92-6.14). Adjusted odds of past-year methamphetamine injection were more than three times as high in adults with a disability, compared to those without a disability (AOR, 3.21; 95 % CI, 2.37-4.33) and more than two times as high in adults with a disability for cocaine injection (AOR, 2.77; 95 % CI, 1.84-4.15). CONCLUSION: Disability status is associated with injection of various types of drugs, and a variety of disability types are associated with higher odds of injection drug use.
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