Telemedical communication patterns in myasthenia gravis in a remote monitoring study

Abstract Purpose Myasthenia gravis (MG) is a rare neuromuscular disease. In-person appointments in specialized centers are not readily available, especially on short notice. The purpose of this study was to analyze patient-specialist communication through a telemedical platform. Methods In a randomized controlled study 45 MG patients were observed over three months. The intervention group ( N = 30) was monitored via a mobile application (‘app’) that enabled chat function and assessed MG -specific outcome measures and data from external devices. We quantitatively evaluated communication patterns for patients and specialists from the chat. Controls ( N = 15) received standard of care. Perceived MG specialist accessibility and contact with physicians outside the study team regarding MG-related issues was assessed in both groups. Findings In total, MG specialists were contacted a median of six times per patient via the chat, most commonly regarding medical issues (151, 54.5%), followed by technical (70, 25.3%), organizational (53, 19.1%), and other (3, 1.1%) topics. Specialists initiated contact a median of eight times per patient, most frequently addressing medical concerns (190, 49.4%), 38.4% of which were recommendations for medication changes. Specialists also addressed technical (154, 40.0%), organizational (36, 9.4%) and other (5, 1.3%) issues. Contacts with physicians outside the study team did not differ between groups. Perceived specialist accessibility was rated higher with telemedical support by the intervention group. Conclusion MG patients have a notable demand for timely advice especially concerning treatment recommendations. Future studies should evaluate the potential of telemedical solutions to prevent worsening of symptoms. Trial registration The study was registered under DRKS00029907 on August 19, 2022.