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.

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.

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.

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.