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Abstract Details

Burdens of Neuromyelitis Optica Spectrum Disorder: Real-world Perspectives from Caregivers
Autoimmune Neurology
P10 - Poster Session 10 (11:45 AM-12:45 PM)
14-002

To evaluate real-world humanistic burdens of NMOSD from caregiver perspectives.

Neuromyelitis optica spectrum disorder (NMOSD) can have a substantial impact on patient activities of daily living, necessitating caregiving. We explored experiences of NMOSD caregivers and potential impacts of caregiving on their own health and well-being.
US caregivers (aged 18-70 years) of family members with self-reported, neurologist-diagnosed NMOSD participated in a cross-sectional online survey conducted between November 2022 and April 2023. Demographics, perspectives on NMOSD-related burdens and health-related quality of life (HRQOL) were assessed. Samples of non-caregivers and non-NMOSD/multiple sclerosis (MS) caregivers were matched to NMOSD caregivers using propensity score matching to benchmark caregiver burden.
Of the 70 NMOSD caregivers, 52.9% were male and 64.3% were White; mean (SD) age was 42.0 (14.1) years. Care was most commonly provided for a spouse (50.0%), parent (18.6%) or child (14.3%) with NMOSD. Mean (SD) hours of caregiving per week was 40.3 (30.2). Overall, 62.9% were employed full-time and 10.0% part-time; 61.4% took time off to provide care, and 58.1% had trouble fulfilling work responsibilities. Negative impacts of caregiving included interference with traveling/leisure activities (60.0%), saving money (40.0%) and career advancement (31.4%). Coping strategies included learning about NMOSD (52.9%), accepting the unpredictability of NMOSD (44.3%) and the caregiving relationship (42.9%). The mean extent of absenteeism, presenteeism, work productivity loss and overall activity impairment in NMOSD caregivers was significantly higher than in the non-caregiver cohort but not significantly different from the non-NMOSD/MS caregiver cohort. Despite these negative impacts, NMOSD caregivers reported physical and mental health scores comparable to the matched non-caregiver cohort and significantly better than the matched non-NMOSD/MS caregiver cohort, suggesting effective resilience. 

In this cohort, NMOSD caregivers reported substantial burden due to caregiving responsibilities. However, HRQOL scores indicated resilience among NMOSD caregivers compared with non-caregivers or non-NMOSD/MS caregivers.
Authors/Disclosures
Shervin Gholizadeh
PRESENTER 		Mr. Gholizadeh has received personal compensation for serving as an employee of Genentech.
Anisha Patel, PhD (Genentech Inc.) Dr. Patel has received personal compensation for serving as an employee of Genentech. An immediate family member of Dr. Patel has received personal compensation for serving as an employee of Google. Dr. Patel has stock in Genentech Inc.. An immediate family member of Dr. Patel has stock in Google.
Ashley Martin (Cerner Enviza) No disclosure on file
Kacper Perkowski (Oracle Life Sciences) No disclosure on file
Kathryn Krupsky (Cerner Enviza, an Oracle Company) No disclosure on file
Patrick Olsen No disclosure on file
Jacinta Behne (The Guthy-Jackson Charitable Foundation) Ms. Behne has nothing to disclose.
Megan Behne (The Guthy-Jackson Charitable Foundation) Ms. Behne has received personal compensation for serving as an employee of The Guthy-Jackson Charitable Foundation. Ms. Behne has received personal compensation in the range of $50,000-$99,999 for serving as a Independent Contractor with The Guthy-Jackson Charitable Foundation.
Kim Jackson-Matthews (The Guthy-Jackson Charitable Foundation) No disclosure on file
Lisa McDaniel (The Guthy-Jackson Charitable Foundation) No disclosure on file
Cori Woolf (The Guthy-Jackson Charitable Foundation) No disclosure on file
Michael R. Yeaman, PhD (UCLA) Dr. Yeaman has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Yeaman has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Genentech-Roche. Dr. Yeaman has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. The institution of Dr. Yeaman has received research support from National Institutes of Health. The institution of Dr. Yeaman has received research support from U.S. Department of Defense. Dr. Yeaman has received intellectual property interests from a discovery or technology relating to health care. Dr. Yeaman has received intellectual property interests from a discovery or technology relating to health care.