Bridging the gap between patient and physician perspectives on management of generalized myasthenia gravis: a Delphi consensus study.

backgroundThere is currently limited data to guide treatment selection, dosing, combination strategies and sequencing in the management of myasthenia gravis (MG). Additionally, MG symptoms are heterogenous between people and with time, requiring an individualized treatment approach. As such, successful patient-physician communication is key. This Delphi project was undertaken by MG specialists and patient representatives to explore their opinion on improving MG management via effective physician-patient communication and collaboration approach.

methodsThis mixed-methods study was conducted in two phases. In Phase I, seven MG specialists and two patient representatives contributed to idea generation. Relevant insights informed the development of the Phase II Delphi survey. A panel of 16 MG specialists and seven patient representatives participated in a two-round Delphi survey. Consensus was defined as ≥ 70% agreement or disagreement on a 6-point Likert scale. Participants responded to the survey from what they considered an ideal scenario, regardless of their real-world experience.

resultsConsensus was achieved on 89% of all statements. Key areas of alignment were – importance of incorporating patient preferences on quality of life (QoL), sustained symptom control, route of administration, and side effects profile. Both groups agreed that current clinical practices insufficiently integrate mental health considerations and patient engagement remains suboptimal. Two key areas of misalignment were – patient representative and physicians had different perspective on how well physicians understood patient preferences and both groups showed different interpretations of side effects (adverse reaction versus issues of tolerability).

conclusionThis Delphi consensus found that while physician and patient representatives shared similar perspectives these were not always reflected in current clinical practice due to differences in understanding of patient preferences. Prioritizing structured conversations on QoL, treatment expectations, and side effect were found important for physicians while improving access to information, openly communicating and actively participating in treatment decisions were key outcomes for patients. This study lays a valuable foundation for deepening conversations and alignment on key topics in MG management among the medical, patient and caregiving communities.