Among patients with generalized myasthenia gravis (gMG), unhappiness with life, including depression, fatigue, disease duration and severity is common, according to study findings published in the Journal of Neurology.
The patient acceptable symptom state (PASS) is a recent tool utilized to assess patient satisfaction. Previous studies among patients with MG who used PASS were retrospective in design and failed to compare clinician observations of patients with MG within the same group of patients with MG who used PASS. In the current study, researchers sought to investigate MG-related and generic factors associated with PASS status among patients with gMG to assess their satisfaction with symptoms.
To accomplish this, they conducted a cross-sectional study at the Copenhagen Neuromuscular Center, an outpatient clinic at the Copenhagen University Hospital—Rigshospitalet, Copenhagen, Denmark from October 2019 to June 2020. Of the 380 patients with gMG treated in this center, 190 were screened for this study. A total of 100 adult patients (60.2±15.4 years of age; 57% female; body mass index (BMI) 28.1±6.1kg/m2; MG duration 6 years [Interquartile range (IQR) 3-13]) were included after consent.
Exclusions were for comorbidities that might interfere with interpretation, pregnancy, ocular MG, and the inability to understand Danish or English. Patients participated in questionnaires (Major Depression Inventory, Charlson Comorbidity Index, Multidimensional Fatigue Inventory, an overall health state [EQ-5D-3L]) that were clinician-reported. For patients being treated with pyridostigmine, their questionnaire period was administered approximately 2 hours after medication.
A single yes/no PASS question was asked of participants. “How satisfied are you with the current adverse effects of your medical treatment for MG?” scored 1-10 with 1 being not at all satisfied. Exactly 33% of participants reported dissatisfaction with their symptoms, associated with an increase in symptoms, depression, fatigue, poor quality of life, and shorter disease duration (PASS negative 3 years, IQR 1-6; PASS positive 8 years, IQR 4-15; P =.001). PASS status seemed unaffected by age, comorbidities, BMI, sex, or MG treatment.
Study limitations included selection bias (at least 54 patients refused to participate), and a Danish version of this PASS question has never been validated though study designers believe such validation unnecessary.
Researchers concluded 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.”
They urge treatment of MG to include a patient-centered approach.
Disclosure: A study author declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.
Andersen LK, Jakobsson AS, Revsbech KL, Vissing J. Causes of symptom dissatisfaction in patients with generalized myasthenia gravis. J Neurol. 2022;269(6):3086-3093. doi:10.1007/s00415-021-10902-1