The ways in which generalized myasthenia gravis (gMG) impact the lives of patients and caregivers are broader than previous reports, which primarily focus on disease symptoms and treatment expenses, according to a presentation at the 9th Congress of the European Academy of Neurology (EAN 2023).
Qualitative, semi-structured interviews of 16 patients with gMG and 12 caregivers identified 84 impacts across 8 domains of responses. The domains included previously-reported categories of social, planning and autonomy, safety, and emotional health. Physical health and sleep were previously combined into 1 domain but were separated for this study. Occupation and financial domains were added to the groupings in this study.
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“In this study, we take a broader perspective by identifying new and assessing known impacts of gMG on the lives of patients and caregivers,” the authors wrote.
The most reported domain during the interviews was the financial impact of the disease, which was mentioned by 100% of both patients and caregivers. This category included things such as cost of daily living needs, reduced income, and financial trade-offs. Within this category, patients mentioned the need for hiring additional household support, and caregivers mentioned having to take on dependents.
The next most commonly mentioned domain was occupation, with patients sometimes mentioning being ‘stuck’ in a role and caregivers mentioned having to pass up job opportunities. The third most common domain was planning and autonomy, with patients noting a lack of independence and caregivers sharing that they had to alter their personal priorities.
“In the future, it is necessary to consider both patient and caregiver experiences in each of the reported domains when assessing the impact of rare diseases such as gMG,” the authors wrote.
Half of the 16 patients interviewed in the study had caregivers, while the other half did not. The majority of patients had been diagnosed for over 5 years (69%), while only half of the caregivers interviewed cared for patients diagnosed over 5 years ago. The majority of patients and caregivers were female (83% and 58%, respectively).
Narayanaswami P, Gwathmey K, Dos Reis S, et al. EPO-228. A comprehensive assessment of the impact of generalised myasthenia gravis (gMG): insights from patients and caregivers. ePoster presented at: 9th Congress of the European Academy of Neurology (EAN 2023); July 1-4, 2023.