What patients don’t say and physicians don’t ask: a needs assessment in myasthenia gravis integrating patient and healthcare professional perspectives

Introduction: Myasthenia gravis (MG) is a rare, autoimmune neuromuscular disease characterized by unpredictable fluctuating muscle weakness. This unpredictability makes effective patient–healthcare professional (HCP) dialogue essential for optimal diagnosis and management, with communication as a key component of shared decision-making (SDM). We designed a needs assessment to understand the differences between HCP and patient communication needs and perspectives on the impact of MG.

Methods: A mixed-methods approach was utilized, comprising a survey and semi-structured interviews with HCPs and patients with MG. Quantitative data from the survey were extracted and analyzed to understand trends of knowledge, skills, and attitudes toward patient–HCP dialogue and SDM in MG. Interviews were transcribed and analyzed using principles of thematic analysis to identify perspectives on the impact of MG and challenges in communication.

Results: Completed survey data were collected from 47 HCPs and 122 patients. There were discrepancies and areas of alignment in the priorities each group placed on knowledge, skills, and attitudes in MG management. Patients valued HCPs’ listening skills and knowledge of treatment history, whereas HCPs prioritized knowing what matters to a patient with MG, including providing support to the patient and their family/carer. Both groups agreed on the necessity of a compassionate and informed approach to care. Interviews (10 HCPs; 10 patients) revealed key themes, including the multifaceted way in which symptoms impact patients’ lives and challenges patients face while communicating their experiences.

Conclusion: This needs assessment indicated general alignment between patients and HCPs on MG symptoms; however, notable disparities were found in relation to the perceived impact of these symptoms on patients’ lives, and communication. While some HCPs expected patients to volunteer information on symptoms and MG-related challenges, patients expected their HCPs to ask. This highlights a need for improved communication strategies, which will foster SDM approaches.