Disability and Health Journal最新文献

Background: The gross motor function classification system (GMFCS) is a well-established measurement of function specific to cerebral palsy (CP) and likely offers prognostic ability for disease trajectories. However, other emerging measurements may be more directly aligned with assessing disease risk for adults with CP, such as the Whitney Comorbidity Index (WCI).

Objective: To expand the methodological menu for prognostic model research, this study assessed whether GMFCS or WCI served as a better prognostic factor of 5-year risks of mortality and 21 relevant morbidity outcomes among adults with CP.

Methods: This retrospective cohort study used medical records from 01/01/2012-06/01/2024 from adults ≥18 years old with CP. A 1-year baseline ascertained the WCI score. Logistic regression estimated and compared the c-statistic of each outcome between: (1) base model (age, sex, race, smoking status, insurance, year of start date) + GMFCS and (2) base model + WCI. Multiple imputation was used for missing GMFCS data to address sample selection bias.

Results: In the complete case analysis with no missing GMFCS data (n = 923), 14 of 21 morbidity outcomes were similarly predicted by base + GMFCS and base + WCI models and 7 were predicted better by base + WCI model, while the mortality outcome was predicted better by base + GMFCS. Using the full cohort after multiple imputation (n = 2601), 18 morbidity outcomes were similarly predicted by both models and 3 were predicted better by base + WCI model, while the mortality outcome was predicted better by base + GMFCS.

Conclusions: This study suggests that while GMFCS was superior for mortality prediction, the WCI had similar-to-superior prediction for most morbidity outcomes.

Background: Individuals with Down syndrome (DS) typically exhibit lower cardiorespiratory fitness and reduced moderate-to-vigorous physical activity (MVPA) compared to persons without disability. Approximately 50-55 % of individuals with DS have congenital heart disease (CHD), which is associated with cardiopulmonary deficiencies and reduced MVPA participation in non-DS populations. It is unknown if CHD related comorbidities compound with DS associated deficits in physical activity and fitness.

Objective: To compare physical activity, cardiorespiratory fitness, and cardiovascular function, of persons with DS with and without CHD.

Methods: Baseline data were used from a 12-month randomized controlled physical activity intervention of adults with DS. Participants with DS were age and sex matched based on presence of CHD. Measures of physical activity through accelerometry (n = 42; CHD, n = 21), cardiorespiratory fitness (VO_2peak; n = 34, CHD n = 17), and cardiovascular function (anaerobic threshold, chronotropic index, O₂ pulse; n = 34, CHD n = 17) were compared by CHD status using Wilcoxon rank sum tests.

Results: There were no differences in VO_2peak between those with and without CHD (CHD 20.3 ml/kg/min; no CHD 21.3 ml/kg/min, p = 0.44). MVPA was lower for those with CHD vs. without CHD (10.0 vs 13.3 min/week, p = 0.05). There were no differences in cardiovascular function by group.

Conclusion: Fitness and physical activity were low regardless of CHD status. Adults with DS and CHD may engage in less physical activity than those without CHD, however fitness and cardiovascular function were not further impaired by CHD. Given the prevalence of CHD in DS, it is important to include those with CHD in work increasing physical activity and fitness.

Background: The Washington Group Short Set on Functioning (WG-SS) is frequently used to identify disability among adults in national surveys. Concerns have been raised about the utility of the WG-SS given that it fails to include any items relating to psychosocial disability.

Objective: To compare prevalence estimates for adolescents and young adults derived from the Washington Group's Child Functioning Module (WG-CFM; age 15-17) and the WG-SS (age 18-25). To estimate the prevalence of impairments among adolescents who were not categorised as having a disability based on the six WG-SS domains. To investigate the association between disability and relative household wealth among adolescents with disabilities who were/were not categorised as having a disability based on the six WG-SS domains.

Methods: Secondary analysis of 40 nationally representative surveys collected in low- and middle-income countries.

Results: Prevalence estimates for disability were significantly higher among adolescents (15.1 % 95 % 14.8-15.4) than young adults (3.2 % 95 % 3.1-3.3). The WG-SS only identified 21%-23 % of young adults who are likely to have a disability. Among adolescents, those identified as having a disability by the WG-CFM, but as not having a disability by the items in the WG-CFM similar to the six domains of the WG-SS primarily had functional limitations related to anxiety and depression. Household wealth was unrelated to disability based on the six WG-SS domains but was strongly related to disability identified by the WG-CFM.

Conclusions: The WG-SS, as it stands, should not be used to identify disability in young adult populations.

Background: The Autism and Developmental Disabilities Monitoring (ADDM) Network continues to report increases in the percentage of U.S. children identified with autism spectrum disorder (ASD). Few studies, however, have examined prevalence among U.S. adults.

Objective: To use open data on ASD prevalence among fee-for-service Medicare beneficiaries, considering trends in the context of sociodemographic factors and dual enrollment in Medicaid.

Methods: Administrative prevalence estimates from the Centers for Medicare and Medicaid Services (CMS) were used to explore changes in ASD prevalence among fee-for-service Medicare beneficiaries. These rates were compared with corresponding childhood prevalence estimates from the ADDM Network.

Results: In 2018, there were 87,108 fee-for-service Medicare beneficiaries with autism diagnoses, representing a 236.1% increase from 2008. For 8-year-old children in the ADDM Network, the 2008-2018 change was 32.41%. National ASD prevalence increased in the fee-for-service Medicare population every year from 2007 through 2018, most substantially for beneficiaries under the age of 65. While only 10 states had a prevalence at or above 1 in 1000 beneficiaries in 2007, 48 states and the District of Columbia had a prevalence above that value in 2018. Prevalence in the Medicare population also increased from 2016 to 2018, a period in which program enrollment declined.

Conclusions: Even more so than among children, autism prevalence increased in the fee-for-service Medicare population from 2007 through 2018. While geographic and sociodemographic differences in ASD identification existed, prevalence grew across states and most subgroups. Further research is needed to address questions involving the identification and support of autistic adults.

In this paper, we examine the critical role of Ombudsman programs in facilitating the transition from Medicare-Medicaid Plans (MMPs) to Dual Special Needs Plans (D-SNPS) for dual-eligible members. As states implement this federally mandated transition, Ombudsman programs serve as essential supports for the dual-eligible population who are navigating complex healthcare changes. Through analysis of Ombudsman programs in California, Massachusetts, Rhode Island, and Michigan, we highlight how these services address beneficiary concerns, resolve access issues, and provide valuable insights to policymakers. We emphasize the importance of maintaining and potentially expanding Ombudsman programs during and after the transition to ensure person-centric, high-quality care for dual-eligible members.

Background: Persons with intellectual and/or developmental disabilities (IDD) are a growing population, frequently living with complex health conditions and unmet healthcare needs. Traditional clinical practice and research methods and measures may require adaptation to reflect their preferences.

Objective: The perspectives of people with IDD, caregivers/partners, and clinicians were obtained to provide insight into factors contributing to the health and wellness of people with IDD. These, in turn, suggest opportunities for improvements in clinical training and care, and considerations for enhancing research methods and measures.

Methods: An exploratory design, participatory methods, abductive qualitative approach and thematic analysis were employed. Interview data were obtained in twelve focus groups with people with IDD (n = 25), caregivers/partners (n = 21), and clinicians (n = 27). Particular attention was paid to supporting attendees in focus group participation, with adaptations and accommodations made for communication preferences, and graphic illustrations were provided.

Results: Themes emerging across attendee categories that reflect factors contributing to health and wellness for people with IDD include: (1) making healthy choices; (2) participating in everyday activities; (3) benefitting from natural supports (e.g., family, friends, peers); and (4) accessing skilled professional supports (e.g., healthcare provision and payment).

Conclusions: Study findings underscore factors related to supporting health and wellness for people with IDD and suggest the importance of autonomy, accessibility, healthy relationships, self-advocacy, and tailored clinical care. People with IDD can be actively engaged throughout the research enterprise to ensure the relevance, acceptability, and accessibility of research methods and measures; promote inclusiveness; and address health disparities.

Background: Economically insecure people with disabilities are often forced to choose between health and housing. Housing instability in the form of mortgage, rent delinquency, or missing utility payments can adversely affect the health and well-being of people with disabilities and, specifically, people with LTSS needs.

Objective: Our study investigates the disparity in housing stability for LTSS households and non-LTSS disability households in comparison to non-disability households. We also investigate the differences in housing stability indicators between 2017 and 2021 (during COVID-19) to assess the potential impact of the COVID-19 crisis on housing instability. Finally, we conducted a stratified analysis to investigate the intricate relationship between LTSS needs and aging.

Methods: We used data from the American Housing Survey (AHS) from 2017 to 2021 to conduct a logistic regression analysis to examine housing instability for households with members with LTSS needs. We also conducted a stratified logistic regression analysis, with data stratified by age groups, to investigate whether this relationship varied across different age groups.

Results: LTSS households faced housing instability in 2017 and 2021, with higher odds of missing mortgage, rent, and utility payments. Compared to 2017, LTSS households in 2021 face marginally lower odds of missing mortgage and utility payments but higher odds of missing rent.

Conclusion: We need sustained policy intervention to reduce housing instability for LTSS and non-LTSS households. Some policies employed during the COVID-19 crisis at both federal and state levels may have reduced housing instability for the LTSS and non-LTSS disability households.