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Background/Objectives: Our understanding of the transdiagnostic factors that influence health-related quality of life (HRQOL) in individuals with neurodivergent conditions is very sparse and highly siloed by diagnosis labels. Research on transdiagnostic predictors of HRQOL across neurodevelopmental conditions is needed to enable care models that address shared needs of neurodivergent individuals beyond diagnostic boundaries. Our objective was to identify transdiagnostic factors associated with HRQOL in children with autism, epilepsy, or comorbid autism/epilepsy. Methods: This cross-sectional study included 37 autistic and/or epileptic children (mean age = 9.2; SD = 3.9; boys = 28). Parents provided sociodemographic information and completed the following measures: Social Communication Questionnaire (measure of severity of autistic symptoms); Parenting Stress Index, Fourth Edition; Pediatric Quality of Life Inventory; and the Behavioral Assessment System for Children, Third Edition. Child intellectual functioning was measured using age-appropriate scales: the Wechsler Preschool and Primary Scale of Intelligence-Fourth Edition: Canadian or the Wechsler Intelligence Scale for Children-Fifth Edition: Canadian. Results: Higher autistic symptom severity (OR = 0.851 95% CI: 0.732–0.988, p = 0.034) and parenting stress (OR = 0.687 95% CI: 0.493–0.959, p = 0.027) were associated with poorer HRQOL. Full Scale IQ and adaptive skills showed trend level associations with HRQOL. Sociodemographic factors including maternal education, child sex, and child age as well as child diagnosis were not associated with HRQOL. Conclusions: In this transdiagnostic sample of children, autism symptom severity and parenting stress were shared predictors of HRQOL. Interventions targeting child autistic symptoms and parents' levels of stress could result in improved HRQOL in neurodivergent populations. [ABSTRACT FROM AUTHOR]

Background and Objectives: Visibility of sexual and gender minority (SGM) people has been steadily increasing over the recent years; however, little is known about the distinct seizure and mental health characteristics among SGM people with epilepsy. In this study, we describe these characteristics among SGM subgroups., Methods: Data on demographics, seizure metrics, mental health, and quality of life were collected using patient-reported questionnaires gathered at first epilepsy clinic visits as part of routine clinical care from January 2019 to September 2023 at Massachusetts General Hospital. SGM people were defined as people who completed both sexual orientation and gender identity questionnaires and reported a sexual orientation other than heterosexual and/or a gender identity other than cisgender. Seizure control was defined as 1 year or more without experiencing seizures. Anxiety, depression, and quality-of-life data were collected through ordinal scales (GAD-7, PHQ-9, and PROMIS 10, respectively). Descriptive statistics were used to compare data between groups. No association test was performed because of the descriptive nature of this study., Results: From 4,046 first-visit questionnaires, 2,166 (53.53%) had sexual orientation and gender identity information, with 143 (6.6%) of these respondents identified as SGM. Seizure control was present in 27 (65.85%) and 401 (62.95%) heterosexual cisgender respondents. Median values of SGM and heterosexual cisgender respondents were 5 (interquartile range [IQR] 8) and 3 (IQR 6) for PHQ-9 (depression), 4 (IQR 7) and 3 (IQR 10) for GAD-7 (anxiety), 41.1 (IQR 14.5) and 45.8 (IQR 14.5) for PROMIS-10-Mental, and 47.7 (IQR 11.8) and 50.8 (IQR 15.4) for PROMIS-10-Physical, respectively., Discussion: This study provides one of the first overviews of distinct epilepsy, mental health, and quality-of-life metrics among SGM people. The low proportion of survey responses regarding sexual orientation and gender identity fields indicate the need for improved data collection methods in epilepsy clinics., Competing Interests: The authors report no relevant disclosures. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp., (© 2024 American Academy of Neurology.)

Background and Objectives: Epilepsy affects approximately 1.2% of the US population, resulting in 3.4 million Americans with active epilepsy. Antiseizure medication (ASM) is considered the mainstay of treatment, effective for two-thirds of people with epilepsy (PWE), while at least one-third experience drug-resistant epilepsy. A significant percentage of PWE who are treated with ASMs report nonadherence to this type of medication, leading to potentially preventable seizures and the potential for being inappropriately classified as having drug-resistant epilepsy. Ongoing seizures are associated with increased morbidity, mortality, and health care costs, among other consequences. Recognizing when PWE struggle with ASM adherence is essential for creating effective interventions and prevention strategies to improve patient outcomes., Methods: As part of the Epilepsy Learning Healthcare System Registry, we collected data from 2020 through 2023 from 4,917 individuals seen at 8 epilepsy clinics in the United States. In this cross-sectional study, we used logistic regression analysis to examine the relationship between patient-reported seizure control (or provider-reported seizure control for some sites) and endorsed barriers to medication adherence. In addition, we explored potential associations with demographic variables such as sex, race, and ethnicity. The data analysis was conducted using R version 2023.06.1 + 524., Results: Overall, 18.4% (893/4,848) reported adherence barriers and 37.7% (1,447/3,834) reported seizure control, defined as no seizures for the preceding 12 months or longer. The most prevalent barriers were forgetting to take ASMs (48.2%), experiencing ASM side effects (29.2%), and feeling as if the ASMs were not helping in controlling seizures (21.3%). The PWE who reported adherence barriers had 0.6 lower odds of having seizure control compared with those who did not report barriers (95% CI 0.4-0.7) and 0.6 lower odds of having seizure control after adjusting for race, ethnicity, and sex (95% CI 0.5-0.7)., Discussion: We observed significant barriers to medication adherence and inadequate seizure control among adult PWE across 8 centers in the United States. This study suggests that PWE might benefit from standardized screening for adherence barriers with behavioral strategies to address these barriers offered during clinical encounters to personalize care., Competing Interests: M.A. Donahue, H. Akram, and J. Brooks report no disclosures relevant to the manuscript; A. Modi reports NIH funding, Stipend for being the Editor for the Journal of Pediatric Psychology, Royalties from Elsevier on a book about adherence, and Consulting with Encoded Therapeutics; J. Veach. A.Kukla, and S. Benard report no disclosures relevant to the manuscript; S.T. Herman reports funding from Epilepsy Therapy Development Project, NIH (R01NS047029), and Epilepsy Foundation (Epilepsy Learning Healthcare System); K. Farrell reports no disclosures relevant to the manuscript; D. Ficker is a consultant at Best Doctors and Verana Healthcare, S. Zafar reports funding from NIH; D. Sirsi, D.Phillips, and J. Pellinen report no disclosures relevant to the manuscript; J.R.Buchhalter receives funding from Epilepsy Foundation (Epilepsy Learning Healthcare System), Epilepsy Study Consortium, Biocodex, UCB, and Epilog Clouds of Care; L.M.V.R.M. receives funding from NIH (1K08AG053380-01A1, 1R01AG062282-01), Epilepsy Foundation (Epilepsy Learning Healthcare System); B.E.F. receives salary support from the Epilepsy Foundation, research funding from UCB Biopharma (Human Epilepsy Project 2) and PCORI (RI-PCC-2017 [SUB: 303699] and PPRN-1306-04577). Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.)