What question did this study set out to answer?

This research aims to explore the burden and quality of life in patients with generalised myasthenia gravis and their caregivers, specifically in the Asia-Pacific region.

April 13, 2026Open Access

Patient- and Caregiver-Reported Burden and Quality of Life in Generalised Myasthenia Gravis: A Multinational Real-World Survey in the Asia–Pacific Region

Key Points

This research aims to explore the burden and quality of life in patients with generalised myasthenia gravis and their caregivers, specifically in the Asia-Pacific region.
Cross-sectional survey involving neurologists and their patients with generalised myasthenia gravis.
Data collected from 163 neurologists reporting on 434 patients in six Asia-Pacific countries.
Patients and caregivers completed the EQ-5D-5L and FACIT-fatigue self-reported measures.
Descriptive analyses and weighted kappa analyses to assess neurologist-patient agreement on quality of life.
Patients experienced significant impairments across all EQ-5D-5L domains; 79.4% reported limitations in usual activities.
54.6% of patients showed severe fatigue based on FACIT-Fatigue scores.
Kappa value of 0.2692 indicated fair agreement between neurologists and patients regarding perceived quality of life.
Caregivers reported an average overall work productivity loss of 27.6% and significant activity impairment.

Abstract

Understanding patient- and caregiver-reported burden of generalised myasthenia gravis (gMG) is essential to inform region-specific management and policy decisions. However, real-world data from the Asia–Pacific region remain limited. Data were drawn from the Adelphi Real World gMG Disease Specific Programme™, a cross-sectional survey of neurologists and their patients with gMG conducted in Australia, China, Japan, Malaysia, South Korea, and Taiwan between July 2023 and January 2024. Neurologists reported patient demographics, clinical characteristics, and perceived patient quality of life (QoL). Patients, and patients’ caregivers provided answers to self-reported outcome measures, including the EQ-5D-5L, corresponding to status at the time of survey. Analyses were descriptive other than weighted kappa analyses used to measure neurologist-patient agreement on subjective patient QoL at the time of survey. Overall, 163 neurologists reported data for 434 patients, of whom 205 self-reported data alongside 151 caregivers. Most patients were female (58.5%), with a mean (SD) age of 51.4 (15.2) years, and received caregiver support (71.4%). Patients reported deficits across all EQ-5D-5L domains, including usual activities (79.4%), and moderate to extreme anxiety/depression (29.4%), with a mean (SD) index score of 0.72 (0.23). Most patients (54.6%) had a FACIT-Fatigue score < 30, indicating severe fatigue, and 45.0% of patients had reduced employment due to gMG. A kappa value of 0.2692 indicated a fair agreement between neurologist and patient perceived patient QoL. Mean (SD) patient absenteeism was 11.8% (20.8%), presenteeism 39.2% (22.5%), overall work productivity loss of 42.9% (23.9%), and activity impairment of 51.3% (23.9%). Caregivers reported a mean (SD) 27.6% (19.6%) overall work productivity loss and 47.0% (24.1%) activity impairment. Patients and their caregivers reported substantial burden to QoL, including impaired work productivity, limitations in activities of daily living, fatigue, and anxiety/depression. Further research into health-policy initiatives is warranted to more effectively address these unmet needs in the Asia–Pacific.

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