OBJECTIVES: Informal caregivers play a crucial role in supporting individuals with Myasthenia Gravis (MG), but their burden remains understudied. This analysis aimed to assess the burden experienced by informal caregivers of MG patients and explore its association with disease severity.

METHODS: Pairs of adult MG patients and their informal caregivers from Germany, Italy, Spain and the UK contributed data to the observational digital MyRealWorld-MG study, and these data were combined with a paper survey among patients and caregivers in France. Patients were categorized based on their MG-ADL score as mild (0-4), moderate (5-9) or severe (>=10), whilst the caregiving burden was evaluated using the Zarit Burden Interview (ZBI-22).

RESULTS: The study included 69 patients and their caregivers, who were predominantly spouses (84%). Mean ages of caregivers (53.7) and patients (50.7) were similar, but only 39% of caregivers were female, compared to 75% of patients. The mean daily caregiving hours were 5.1 (SD 6.5), with 20% of caregivers providing care for 15-49 hours/week and 30% for 50+ hours/week.

Approximately 18% of caregivers reported feeling frequently or nearly always stressed, while 44% reported frequent or near-constant fear about the future. Additionally, 36% felt that their patient highly depended on them, and 30% reported their patient made them feel like they were the only one they could depend on. Financial strain was also evident, with 26% of caregivers frequently or nearly always feeling that they lacked sufficient funds to care for the MG patient alongside other expenses.

The mean ZBI score was 24.3 (SD 15.0). Caregivers of patients with moderate or severe MG had significantly higher ZBI total scores (28.3 and 27.1, respectively) compared to caregivers of patients with mild MG (18.7).

CONCLUSIONS: This analysis highlights the considerable burden experienced by informal caregivers of individuals with MG, as reflected by high ZBI scores across multiple domains.