ArticleOrphanet journal of rare diseases2025
Caregiving burden among caregivers of people with myasthenia gravis.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Characterizing and quantifying disease impacts of generalized myasthenia gravis (gMG) in the United States: insights from patient and caregiver interviews and surveys.Journal of patient-reported outcomes · 2026Article
- The Fiscal Consequences for the Canadian Government of Efgartigimod in the Treatment of Generalized Myasthenia Gravis.Journal of health economics and outcomes research · 2026Article
- The Psychological Burden of Neuromuscular Diseases: A Narrative Review of Anxiety, Depression, Coping, and Quality of Life.Muscles (Basel, Switzerland) · 2025Review
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Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
INTRODUCTION/
aimsInformal caregivers play an important role in the lives of people with Myasthenia gravis (MG). This study aims to assess the caregiver burden (CB) experienced by caregivers of MG patients.
methodsA cross-sectional study design collected patient and caregiver data in Germany, Italy, Spain, the UK, and France. The Zarit Burden Interview (ZBI-22), EQ-5D-5L and bolt-on questions, and PROMIS Global Health-10 were used to measure CB and overall health-related quality of life (HRQoL).
resultsCaregivers (N = 69) reported a mean ZBI-22 score of 24.3, with 40.6% reporting no burden, 47.8% mild-to-moderate burden, 8.7% moderate-to-severe burden, and 2.9% severe burden. The most impacted ZBI-22 dimensions were "losing control over one's life", "financial burden" and "relationships with relatives". Based on a generic health-related quality of life scale (EQ-5D-5L plus bolt-on questions), the dimensions that were more frequently reported among MG caregivers to cause moderate-to-extreme problems were: tiredness (43%), self-confidence (32%), and anxiety/depression (28%). EQ-5D-5L utilities (values from -1 to 1, reflecting overall HRQoL) were negatively associated with higher ZBI-22 scores (little or no burden: 0.942, mild-to-moderate burden: 0.864, moderate-to-severe burden: 0.783, severe burden: 0.570). Regarding PROMIS-10 items, 48% of caregivers reported often/always being bothered by anxiety, depression, or irritation; 47% reported being not at all or little able to carry out daily activities; and 37% reported having (very) severe fatigue.
conclusionInformal caregivers of MG patients experience a substantial burden, impacting their physical, emotional, and financial well-being. Findings highlight the need for tailored interventions to alleviate CB and enhance the caregivers' overall HRQoL.
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