Financial and Mental Health Burden on Caregivers of Patients With Neuromyelitis Optica Spectrum Disorder (NMOSD) in the United States
Author(s)
Evanthia Bernitsas, MD1, Mayvis Rebeira, PhD2, Roc Reguant, PhD3, Jesus Loreto, AS4, Jamie Sullivan, MPH5, Elizabeth Crevier, BS6, Ashlee Olsen, Patient Consultant7, Benjamin J. Osborne, MD8.
1Creighton University School of Medicine, Omaha, NE, USA, 2Alexion AstraZeneca Rare Disease (affiliation at the time research was conducted), Mississauga, ON, Canada, 3Alexion, AstraZeneca Rare Disease, Barcelona, Spain, 4Caregiver Consultant, Unspecified, FL, USA, 5EveryLife Foundation for Rare Diseases, Washington, DC, USA, 6Avalere Health, Washington, DC, USA, 7Patient Consultant, Orlando, FL, USA, 8Medstar Georgetown University Medical Center, Washington, DC, USA.
1Creighton University School of Medicine, Omaha, NE, USA, 2Alexion AstraZeneca Rare Disease (affiliation at the time research was conducted), Mississauga, ON, Canada, 3Alexion, AstraZeneca Rare Disease, Barcelona, Spain, 4Caregiver Consultant, Unspecified, FL, USA, 5EveryLife Foundation for Rare Diseases, Washington, DC, USA, 6Avalere Health, Washington, DC, USA, 7Patient Consultant, Orlando, FL, USA, 8Medstar Georgetown University Medical Center, Washington, DC, USA.
OBJECTIVES: 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. 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.
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.
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.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EE465
Topic
Economic Evaluation
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies, Work & Home Productivity - Indirect Costs
Disease
Neurological Disorders, Rare & Orphan Diseases