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1.
Children (Basel) ; 11(2)2024 Feb 04.
Artigo em Inglês | MEDLINE | ID: mdl-38397310

RESUMO

Objectives: To assess non-pharmacologic treatment outcomes pertaining to health-related quality of life (HRQoL) in youth with chronic idiopathic pain and their families. Methods: We conducted a retrospective cohort study of 115 youth with chronic idiopathic pain enrolled in a non-pharmacologic, hospital-based intensive interdisciplinary pain treatment (IIPT) program. HRQoL measures for the patient (Pediatric Quality of Life Inventory [PedsQL] short form) and family unit (PedsQL Family Impact) were collected on admission and discharge as part of routine clinical care. Changes in PedsQL scores were calculated using the Wilcoxon signed-rank test. Multivariable linear regression was used to explore factors associated with patient-level HRQoL. Results: Both individuals and the family unit reported that their HRQoL improved in all domains by program completion. Improvements in pain and allodynia were present for program participants at the time of completion as well as at the 3-month follow-up, suggesting durability of these effects. Conclusions: A non-pharmacologic IIPT program is a compelling treatment for pediatric and adolescent chronic idiopathic pain, for both patients and the family unit. Patients participating in this program had positive treatment outcomes with significantly improved subjective and objective measures of physical, emotional, social, and cognitive function.

2.
PLoS One ; 17(11): e0277249, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36417345

RESUMO

BACKGROUND: There is limited data to assess, track, or quantify accessibility and disability inclusion across universities. OBJECTIVE: This cross-sectional study assessed disability inclusion and accessibility at the top 50 National Institutes of Health (NIH)-funded undergraduate programs in the United States. We hypothesized that there is no association between NIH funding and the University Disability Inclusion Score. METHODS: A novel tool, the University Disability Inclusion Score assessed disability inclusion and accessibility using 10 indicators spanning 4 categories: (1) accessibility of built and virtual environment, (2) public image of disability inclusion, (3) accommodations processes and procedures, and (4) grievance policy. Based upon the total points (out of a total score of 100), each university was assigned a letter grade (A-F). RESULTS: Of the top 50 NIH-funded institutions, 6% received an A grade on the Score, while 60% received D or F. The mean scores were 15.2 (SD = 5) for accessibility of built and virtual environment (20 points), 10 (SD = 3) for public image of disability inclusion (20 points), 30.6 (SD = 10) for accommodations processes and procedures (50 points), and 8.1 (SD = 3) for grievance policy (10 points). CONCLUSIONS: Our findings suggest room for improvement in disability inclusion and accessibility among top university recipients of NIH funding. To provide an equitable academic experience, universities must prioritize disability inclusion.


Assuntos
Pesquisa Biomédica , Administração Financeira , Estados Unidos , Humanos , Estudos Transversais , National Institutes of Health (U.S.) , Universidades
3.
Disabil Health J ; 15(4): 101366, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36041996

RESUMO

BACKGROUND: The Supplemental Nutrition Assistance Program (SNAP) is a federal public benefit providing food assistance to millions of Americans. However, it is typically administered by states, creating potential variation in accessibility and transparency of information about enrollment for people with disabilities. OBJECTIVE: To develop and demonstrate the use of a method to assess the accessibility and transparency of information about the disability-inclusive process and practices of SNAP enrollment. METHODS: Cross-sectional data was collected from SNAP landing and enrollment webpages from all 50 U.S. states, the District of Columbia, and New York City from June-August 2021. Based on principles of universal design and accessibility, scores were determined for each SNAP program across three areas: flexibility in the enrollment process (6 points), efficiency of finding information about enrollment on SNAP websites (6 points), and the accessibility of SNAP webpages (6 points). Total scores were the sum of these sub-categories (18 points maximum). RESULTS: Of the 52 SNAP programs assessed, mean scores were 10.66 (SD = 2.51) for the total score, 2.67 (SD = 0.91) for flexibility in the enrollment process, 3.32 (SD = 1.19) for efficiency of finding information about enrollment on SNAP websites, and 4.67 (SD = 1.72) for the accessibility of SNAP webpages. No programs received the maximum flexibility score (6 points) on flexibility, 2 programs received the maximum on efficiency, and 31 programs the maximum on accessibility. CONCLUSIONS: We found differences in the accessibility, flexibility, and efficiency of SNAP program enrollment information available on SNAP websites and outline room for improvement across all three of these areas.

5.
Disabil Health J ; 14(3): 101103, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33840617

RESUMO

BACKGROUND: Prior research has demonstrated that the needs of the disability community have not been met during public health emergencies. The COVID-19 pandemic has exacerbated existing inequities for many populations including people with disabilities, and data is needed to develop inclusive public health response policies. OBJECTIVE: To identify how COVID-19 has uniquely impacted the lives of adults with disabilities. METHODS: 38 participants were recruited through disability advocacy groups and social media. Semi-structured virtual focus groups were conducted with adults (≥18 years) who self-identified as having a disability. Focus groups were conducted for each of six disability sub-groups: vision, hearing, mobility and physical, mental health, cognitive, intellectual, and developmental, and chronic illness. Using inductive coding, major themes were identified and compared across the disability sub-groups. RESULTS: Three major themes and thirteen sub-themes were identified from the focus groups. The three major themes comprised: new problems created by the pandemic, obstacles in daily life that were exacerbated by the pandemic, and broader changes to accessibility and disability identity. Sub-themes such as difficulty with COVID-19 testing and regular medical care were reported by participants of all disability sub-groups, while other sub-themes like direct care needs and medical rationing were reported by participants from a subset of the disability sub-groups. CONCLUSIONS: These results indicate how the COVID-19 pandemic unequally impacts disabled people. The participants indicated that to fully address their needs, disability perspectives must be included in the public health pandemic response. As new research shows that COVID-19 can cause long-term disability, the urgency to ensure the disability community is part of public health policies will increase.


Assuntos
COVID-19 , Pessoas com Deficiência , Adulto , Teste para COVID-19 , Humanos , Pandemias , SARS-CoV-2
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