Challenges and rehabilitation needs among adults with myasthenia gravis - a Danish cross-sectional questionnaire study

PURPOSE: The aim was to examine disease-related challenges and rehabilitation needs among adults with Myasthenia Gravis (MG) to target future support initiatives.

MATERIALS AND METHODS: The study involved a cross-sectional questionnaire based on patient-reported outcomes within 11 domains/95 items, covering potential challenges and needs in living with MG. Data were compared against the subgroups gender, age, and years with MG.

RESULTS: In total, 197 participants responded. The median number of challenges across all domains was 15 out of 95 with a higher prevalence in women than men and with no differences in relation to age or years with MG. The most prominent challenges were muscle strength, physical tiredness, and mental fatigue. The median number of total rehabilitation needs was three out of 95 with a higher prevalence in women than men, but with no differences between age and years with MG. The most prominent rehabilitation needs were physical tiredness, mental fatigue, and knowledge on existing interventions. Many participants reported unmet psychological needs, especially women, participants from 40 years of age, and participants who had lived with MG for more than five years.

CONCLUSIONS: MG significantly impacts on everyday functioning and activities. Disease-related challenges and rehabilitations needs manifested differently across genders. A profound difference was found between the number of challenges and rehabilitation needs reported.