Financial and Mental Health Burden on Caregivers of Patients with Neuromyelitis Optica Spectrum Disorder (NMOSD) in the United States
Evanthia Bernitsas1, Mayvis Rebeira2, Roc Reguant2, Jesus Loreto3, Jamie Sullivan4, Elizabeth Crevier5, Ashlee Olsen6, Benjamin Osborne7
1Creighton University School of Medicine, 2Alexion, AstraZeneca Rare Disease, 3Caregiver consultant, 4The EveryLife Foundation for Rare Diseases, 5Avalere Health, 6Patient consultant, 7Medstar Georgetown University Medical Center
Objective:

This analysis of caregivers for patients with NMOSD assessed income losses associated with caregiving for patients with versus without a reported relapse, financial tradeoffs, and mental health burdens.

Background:
NMOSD is a rare autoimmune disease characterized by repeated, unpredictable relapses, often leading to irreversible neurological disability. In a survey, 53% of patients with NMOSD reported needing a caregiver.
Design/Methods:

Unpaired patient and caregiver respondents completed an electronic survey (January-April 2024) of demographics, relationship to caregiver/patient, and costs for 2023. Impacts on caregivers’ income, employment, educational opportunities, and mental health were evaluated. Record linkage was used to integrate patient characteristics (eg, age, ≥1 relapse in 2023) by pairing a patient respondent with each caregiver respondent based on their description of the individual for whom they provided care.

Results:

Of 49 caregiver respondents (mean±SD age, 42.1±13.6 years; mean±SD weekly caregiving time, 39.7±23.3 hours), most were employed full-time (57.1%) and reported a household income <$100,000 (52%). Caregivers linked to patients with a relapse lost ~$171 more weekly per hour of caregiving than caregivers linked to patients without a relapse, amounting to an average income loss of $7079/year. Providing >35 hours/week of care was associated with an increased likelihood of occupational change; 25% of caregivers reported that NMOSD influenced their decision to stop working/retire. Of caregivers for patients aged >45 years, 26% reported lost educational opportunities due to caregiving. Caregivers aged <40 years reported more frequent loss of personal identity and mistrust of other caregivers or disproportionate sense of responsibility compared with caregivers aged >40 years.

Conclusions:

Caregivers linked to patients with NMOSD with a relapse reported increased earning loss due to care responsibilities compared with caregivers of patients without a relapse, suggesting treatments that are effective in preventing relapses could reduce caregiver burden. Additionally, caregivers experience a substantial burden on their employment, educational opportunities, and mental health.

10.1212/WNL.0000000000215624
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