Patient Communication Outside of Visits: Implications for Remote Monitoring and Digital Care Models in Myasthenia Gravis

INTRODUCTION/AIMS: Myasthenia gravis (MG) is a rare autoimmune disorder requiring individualized, specialized treatment, yet access to specialized care is limited and documentation fragmented. Several remote monitoring tools have emerged to address this gap, yet their integration into clinical care remains challenging. The aim was to better understand the nature and context of care-related interactions in order to inform the development of clinically meaningful and patient-centered digital health solutions for MG. METHODS: We conducted a survey among physicians and nurses at a tertiary MG center over an eight-week period regarding care-related inquiries, documented using a structured report form that captured the topic, urgency, communication channel, processing time, and clinician involved. RESULTS: About 576 care-related inquiries were recorded. Most inquiries addressed organizational (55.4%) or medical (41.3%) issues. Among medical topics, symptom worsening (30.7%) and treatment-specific questions regarding FcRn and complement inhibitor therapy (19.3%) were most frequent. Organizational topics were most frequently about appointments (43.6%) and prescriptions (35.7%). A total of 115 inquiries (20.0%) were time-critical (requiring same weekday response). Physicians answered 74.3% of inquiries. The most common communication channels were e-mail (42.4%) and telephone (29.0%), followed by the hospital information system (13.7%) and a telemedicine platform (6.9%). Medical inquiries took twice as long to process/respond as organizational ones (median 10 vs. 5 min). DISCUSSION: Our findings show that care-related inquiries in MG are diverse and answered through various communication channels. Remote monitoring solutions hold promise to complement existing care structures in MG and could support timely and structured care but require human-guided processes.