Causes of symptom dissatisfaction in patients with generalized myasthenia gravis

Background: Patient-centered assessments have attracted increasing attention in the last decade in clinics and research. The purpose of this study was to examine the association between patients’ satisfaction with symptoms and several disease-specific and generic outcome measures in 100 patients with generalized myasthenia gravis (gMG). 

Methods: In this cross-sectional study, patients with gMG followed at the Copenhagen Neuromuscular Center from October 2019 to June 2020 participated in one test. The patients completed commonly used MG-specific outcome measures and generic questionnaires for depression (Major Depression Inventory), comorbidities (Charlson Comorbidity Index), fatigue (Multidimensional Fatigue Inventory), overall health state (EQ-5D-3L), and satisfaction with MG treatment. The analyses were anchored in the Patient Acceptable Symptom State (PASS). 

Results: N = 190 patients were screened for the study, and 100 patients were included. One-third of the patients reported dissatisfaction (negative PASS status) with the current symptom state. Increasing MG symptoms, fatigue, depression, low MG-related quality of life, and shorter disease duration were associated with negative PASS status. Age, sex, BMI, MG treatment, and comorbidity did not influence PASS status. 

Conclusions: This study shows that dissatisfaction with the current symptom level is high in patients with gMG and that dissatisfaction is associated with disease severity, disease length, depression, fatigue, and lower MG-related quality of life. The results emphasize the importance of a patient-centered approach to MG treatment to optimize patient satisfaction. The PASS question was useful in this study to investigate the causes of symptom dissatisfaction in gMG.