JMIR Publications

ABSTRACT

Background:

Myasthenia gravis (MG) is rare, chronic autoimmune disorder of the neuromuscular junction that requires specialized care and often life-long treatment, facing challenges due to its rarity and the limited availability of specialists. Telemedical solutions in specialized centers hold considerable promise in bridging this gap by increasing access to this care to a broader patient population in a timely manner. However, there is no research regarding interventional remote care solutions in the field of MG to date.

Objective:

This study aimed to assess the feasibility and usability among MG patients and specialists of a telemedicine platform, tailored to MG patients and designed to facilitate remote monitoring, treated in a specialized center.

Methods:

The telemedicine platform consisted of a patient application (app) and a web-based portal for physicians. Over a period of three months, 30 patients continuously monitored their vital parameters through external devices, including a digital spirometer and a wearable (activity tracker). Furthermore, patients completed seven different patient-reported outcome measures (PROMs) through the app at predefined intervals. Specialists could review this monitoring data and adjust therapy as necessary. Additionally, communication between patients and physicians was facilitated through a chat module. Feasibility was evaluated by adherence rates for completing PROMs within the app, alongside the collection of spirometry and wearable data. Furthermore, user satisfaction was assessed among both MG patients and physicians at the end of study.

Results:

Adherence rates ranged from 80.9% to 100% across all data types, with highest adherence observed for PROMs (97%), followed by spirometry (87.7%) and wearable (80.9%). Notably, patients wore the wearable longer than required by protocol and conducted a higher number of spirometry measurements than required (20 hours/day vs. 14 hours/day (median); and 49 measurements vs. 11 (median) respectively). Technical issues and discomfort with wearables were factors affecting lower adherence in some patients. The System Usability Scale yielded a median score of 85 indicating "excellent usability". Additionally, results from a more detailed user evaluation questionnaire showed high levels of user satisfaction among both patients and healthcare professionals across diverse categories, including their experience of the care program, communication and evaluation of the program.

Conclusions:

Remote monitoring of MG patients through the telemedical platform demonstrated good feasibility and acceptability, as evidenced by above-average adherence rates and user satisfaction for both patients and physicians. The majority of patients wanted to continue using the app. These findings highlight the potential for user-friendly digital tools to enhance MG patient care although addressing technical challenges and ensuring patient comfort with wearables are essential for optimal implementation. Further research involving larger cohorts and longer study duration is warranted to validate these findings. Clinical Trial: https://drks.de DRKS00029907. Registered 19 August 2022