Determine design requirements for a digital tool utilizing validated patient-reported outcomes (PROs) to improve symptom tracking and communication between patients with myasthenia gravis (MG) and healthcare practitioners (HCPs) in routine practice.

A literature review and preliminary interviews with patients with MG (n=3) and HCPs (n=4) were conducted to assess the current state of MG symptom tracking and identify opportunities for improvement. Structured workshops with HCPs (n=5) and validation interviews with patients (n=10) and HCPs (n=9) were held to design a novel digital tool and understand factors influencing adoption. Participating patients and HCPs were US-based. Transcripts were analyzed for themes regarding challenges, preferred solutions, and benefits and applications of the proposed digital tool.

Key design requirements included a two-sided digital solution where patients input validated PROs between clinic visits, and HCPs visualize longitudinal data on demand via integration with electronic health records. The MG-Activities of Daily Living score was the preferred primary visual, with ability to overlay subscores and other contextual data (ie, Patient Acceptability of Symptom State, Neuro-QoL Fatigue, hospitalizations, and medications). Free text patient diary entries with artificial intelligence-generated summaries for HCPs were desired for additional contextualization and personalization. Factors influencing patient adoption included HCP use and potential for one central MG management tool. HCPs noted streamlined visualizations enabling quick data synthesis to support treatment decisions and features to simplify insurance prior authorization/reauthorization would facilitate adoption.

Patients and HCPs agreed the proposed solution would enhance clinical care by improving MG symptom tracking and ultimately treatment decisions. These results support continued development of the digital tool and studies investigating clinical utility.