Systematic review of the patient burden of generalised myasthenia gravis in Europe, the Middle East, and Africa

Abstract

Background Myasthenia gravis (MG) is a rare autoimmune disease characterised by muscle weakness, and progression from ocular (oMG) to generalised (gMG) symptoms results in a substantial negative impact on quality of life (QoL). This systematic review aimed to provide an overview of the patient burden experienced by people living with gMG. Methods Electronic database searches (conducted March 2022), supplemented by interrogation of grey literature, were conducted to identify studies reporting patient burden outcomes in patients with gMG in Europe, the Middle East and Africa. Results were synthesised narratively due to the heterogeneity across trials. Results In total, 39 patient burden publications (representing 38 unique studies) were identified as relevant for inclusion in the systematic review, consisting of 37 publications reporting formal patient-reported outcome measures (PROMs), and two publications describing alternative qualitative assessments of patient experience. The studies included a variety of measures including generic and disease-specific PROMs, as well as symptom-specific PROMs focusing on key comorbidities including depression, anxiety, fatigue and sleep disturbance. The findings showed some variation across studies and PROMs; however, in general there was evidence for worse QoL in patients with gMG than in healthy controls or in patients with oMG, and a trend for worsening QoL with increasing MG severity. Conclusions This review highlights the importance of considering patient QoL when developing and assessing treatment and management plans for patients with gMG. However, the heterogeneity identified across studies illustrates the need for further representative and well-powered studies in large cohorts administering consistent, validated questionnaires. Trial registration The protocol for this systematic review was registered in PROSPERO: CRD42022328444.

Frequency and severity of autonomic dysfunction assessed by objective hemodynamic responses and patient-reported symptoms in individuals with myasthenia gravis

“…In Europe, the estimated incidence of MG is increasing, ranging from 0.63 to 2.9 per 100,000 individuals, with a high female-to-male ratio ( Sobieszczuk et al, 2021 ; Mevius et al, 2023 ). Although MG is associated with an overall increase in life expectancy, patients with MG experience a lower health-related quality of life than the general population ( McCallion et al, 2024 ). In approximately 80% of MG cases, clinical manifestations, including ocular symptoms (ptosis and diplopia), generalized muscle weakness, fatigue, and respiratory insufficiency, are attributed to the presence of muscle nicotinic acetylcholine receptor (nAChR) antibodies.…”