Patient and physician concordance in treatment satisfaction and symptom severity among myasthenia gravis patients in the United States and five European countries.

Abstract

Objective: Quantification of myasthenia gravis (MG) symptom severity and treatment satisfaction could differ whether reported by patients or physicians. The study objective was to explore concordance between assessments of symptom severity, symptom troublesomeness, and treatment satisfaction by patients with MG and their physicians.

Methods: Data were from the Adelphi Real World MG Disease Specific Programme (DSP), a multinational (France, Germany, Italy, Spain, United Kingdom [UK], United States [US]), cross-sectional survey with retrospective chart review independently completed by physicians and their patients in 2020.

Results: Across all patients and all symptoms, physician-patient concordance about symptom severity was moderate (Cohen's Weighted Kappa [κ] statistic = 0.45). However, there was high variability, and when the 17 symptoms were examined individually, agreement was slight or fair (κ = 0.00-0.40). The proportion of physicians describing a given symptom as less severe than the patient ranged from 30.9-74.5%. There were many instances where a physician reported a symptom as absent, but the patient self-reported it as present (e.g. fatigue/tiredness: physician-reported absence in 42% of patients [of whom 11% self-reported mild, 17% moderate, 5% severe]. There was generally greater physician-patient concordance in recognizing patients' most troublesome symptoms; agreement was poor (κ < 0) or slight/fair (κ = 0.00-0.40) for 6 symptoms and moderate/substantial (κ = 0.41-0.80) for 11. Physician-patient concordance regarding treatment satisfaction was fair (κ = 0.37), with physicians reporting higher satisfaction than patients in 36.6% of cases.

Conclusions: Although some physician-patient concordance was observed, many patients reported greater symptom severity and/or lower treatment satisfaction compared with physicians.