Burdens of Neuromyelitis Optica Spectrum Disorder: Real-world Perspectives from Caregivers
Anisha Patel1, Ashley Martin2, Kacper Perkowski2, Kathryn Krupsky2, Patrick Olsen2, Shervin Gholizadeh1, Jacinta Behne3, Megan Behne3, Kim Jackson-Matthews3, Lisa McDaniel3, Cori Woolf3, Michael Yeaman4
1Genentech Inc., 2Cerner Enviza, 3The Guthy-Jackson Charitable Foundation, 4UCLA
Objective:
To evaluate real-world humanistic burdens of NMOSD from caregiver perspectives.
Background:
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.
Design/Methods:
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.
Results:
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.
Conclusions:
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.