OBJECTIVES: Generalized Myasthenia Gravis (gMG) is a chronic, auto-antibody, neuromuscular disease. Diagnosis can be difficult as symptoms, such as fatigue, are often mistaken for a range of other disorders. A timely diagnosis is important to effectively manage the disease, reduce patient anxiety, improve patient quality of life, and avoid unnecessary healthcare resource use.

METHODS: The Adelphi MG Disease Specific Programme (DSP™) collected point-in-time data from a cross-sectional cohort of physicians and their patients with gMG (defined as MGFA class II-V) across France, Germany, Italy, Spain and the UK between March – September 2020. Physicians provided data including demographics, diagnostic pathway and their perception of disease impact. Patients were invited to complete a follow-up form, paired to their physicians, which included the MG-QoL-15r PRO tool.

RESULTS: 191 physicians provided data for 387 gMG patients with a known diagnosis date. 53.9% were female, mean age was 52.5 (SD±15.69) and mean time from diagnosis to survey was 4.2 years (SD±5.66).

Mean time from symptom onset to gMG diagnosis was 1.0 years (SD±1.43). 105 patients (27.1%) received a gMG diagnosis more than a year after the onset of symptoms. At the time of survey, these patients were more likely to experience moderate or higher levels of fatigue (78.1%) and anxiety (75.2%) than those diagnosed within a year (64.7% and 56.2% respectively).

117 patients completed the MG-QoL-15r. Those with a delayed diagnosis (n=43) had higher impairment (14.4; SD±5.50) than those diagnosed within a year (12.6; SD±7.84).

CONCLUSIONS: Physicians reported patients with diagnoses taking longer than a year experienced more fatigue, anxiety, and prolonged burden on health-related quality of life, leading to higher unnecessary health care resource utilization in patients with gMG. These findings underscore the importance of a timely diagnosis of gMG after symptom onset and the need to properly educate all stakeholders on optimal disease management strategies.