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OBJECTIVES: In 2021, the US Congress passed the Accelerating Access to Critical Therapies for Amyotrophic Lateral Sclerosis Act. The law encourages development of "tools, methods, and processes" to improve clinical trial efficiency for neurodegenerative diseases. The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is an outcome measure administered during in-person clinic visits and used to support investigational studies for persons living with amyotrophic lateral sclerosis. Availability of a standardized, remote-use version of the ALSFRS-R may promote more inclusive, decentralized clinical trials. A scoping literature review was conducted to identify existing remote-use ALSFRS-R tools, synthesize feasibility and comparability of administration modes, and summarize barriers and facilitators to inform development of a standardized remote-use ALSFRS-R tool. METHODS: Included studies reported comparisons between remote and in-person, clinician-reported, ALSFRS-R administration and were published in English (2002-2022). References were identified by searching peer-reviewed and gray literature. Twelve studies met the inclusion criteria and were analyzed to compare findings within and across modes of administration. RESULTS: Remote modes of ALSFRS-R administration were categorized into 4 nonmutually exclusive categories: telephone (n = 6), videoconferencing (n = 3), computer or online platforms (n = 3), mobile applications and wearables (n = 2), and 1 unspecified telemedicine modality (n = 1). Studies comparing in-person to telephone or videoconferencing administration reported high ALSFRS-R rating correlations and nonsignificant between-mode differences. CONCLUSIONS: There is insufficient information in the ALSFRS-R literature to support remote clinician administration for collecting high quality data. Future research should engage persons living with amyotrophic lateral sclerosis, care partners, and providers to develop a standardized remote-use ALSFRS-R version.
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BACKGROUND: Many US hospitals are classified as nonprofits and receive tax-exempt status partially in exchange for providing benefits to the community. Proof of compliance is collected with the Schedule H form submitted as part of the annual Internal Revenue Service Form 990 (F990H), including a free-response text section that is known for being ambiguous and difficult to audit. This research is among the first to use natural language processing approaches to evaluate this text section with a focus on health equity and disparities. OBJECTIVE: This study aims to determine the extent to which the free-response text in F990H reveals how nonprofit hospitals address health equity and disparities, including alignment with public priorities. METHODS: We used free-response text submitted by hospital reporting entities in Part V and VI of the Internal Revenue Service Form 990 Schedule H between 2010 and 2019. We identified 29 main themes connected to health equity and disparities, and 152 related key phrases. We tallied occurrences of these phrases through term frequency analysis, calculated the Moran I statistic to assess geographic variation in 2018, analyzed Google Trends use for the same terms during the same period, and used semantic search with Sentence-BERT in Python to understand contextual use. RESULTS: We found increased use from 2010 to 2019 across all the 29 phrase themes related to health equity and disparities. More than 90% of hospital reporting entities used terms in 2018 and 2019 related to affordability (2018: 2117/2131, 99.34%; 2019: 1620/1627, 99.57%), government organizations (2018: 2053/2131, 96.33%; 2019: 1577/1627, 96.93%), mental health (2018: 1937/2131, 90.9%; 2019: 1517/1627, 93.24%), and data collection (2018: 1947/2131, 91.37%; 2019: 1502/1627, 92.32%). The themes with the largest relative increase were LGBTQ (lesbian, gay, bisexual, transgender, and queer; 1676%; 2010: 12/2328, 0.51%; 2019: 149/1627, 9.16%) and social determinants of health (958%; 2010: 68/2328, 2.92%; 2019: 503/1627, 30.92%). Terms related to homelessness varied geographically from 2010 to 2018, and terms related to equity, health IT, immigration, LGBTQ, oral health, rural, social determinants of health, and substance use showed statistically significant (P<.05) geographic variation in 2018. The largest percentage point increase was for terms related to substance use (2010: 403/2328, 17.31%; 2019: 1149/1627, 70.62%). However, use in themes such as LGBTQ, disability, oral health, and race and ethnicity ranked lower than public interest in these topics, and some increased mentions of themes were to explicitly say that no action was taken. CONCLUSIONS: Hospital reporting entities demonstrate an increasing awareness of health equity and disparities in community benefit tax documentation, but these do not necessarily correspond with general population interests or additional action. We propose further investigation of alignment with community health needs assessments and make suggestions for improvements to F990H reporting requirements.