Bridging the communication gap in Myasthenia Gravis: insights from the ENGAGE program

                               
                         Article co-authored by Marc De Backer & Natasha Monin, Medical Communications, UCB

At UCB, we are committed to improving the lives of people living with rare diseases such as myasthenia gravis (MG). In our ongoing effort to enhance care in MG, we are excited to share the findings from the first phase of the ENGAGE educational program, recently published in the prestigious Neurology and Therapy journal. The article, What Patients Don’t Say and Physicians Don’t Ask: A Needs Assessment in MG Integrating Patient and Healthcare Professional Perspectives, sheds light on the crucial communication gaps between patients and healthcare professionals (HCPs).
 

Understanding the Communication Needs in MG
The ENGAGE program was initiated to determine if immersive learning through virtual reality (VR) could serve as a powerful educational tool to enhance neurologists' understanding of the patient experience, ultimately bridging the disconnect between patients and healthcare professionals (HCPs).

Recognizing the unpredictable and fluctuating nature MG, which complicates daily planning and impacts emotional, professional, and social spheres, the program underscores the importance of effective, tailored and compassionate communication between patients and their physicians for optimal disease diagnosis and management.

As the first step in this innovative educational initiative, a comprehensive needs assessment was conducted. In total, 55 HCPs and 133 patients with MG agreed to participate in the survey, of whom 47 HCPs and 122 patients provided responses across Denmark, Germany, the UK, and the U.S. This survey aimed to identify the barriers in patient-HCP dialogue that could affect shared decision-making and overall care.

This needs assessment indicated a general alignment between patients and HCPs on MG symptoms and disparities in the priorities each group placed on knowledge, skills, and attitudes essential for managing MG. People living with MG highly valued their HCP’s listening skills and their understanding of treatment history, while HCPs focused on understanding what matters most to their patients, including offering support to them and their families or carers. Importantly, both groups concurred on the necessity of a compassionate and informed approach to care.
 

Key Findings

• Communication Gaps: One of the most striking insights from our study is the misalignment in communication expectations. While HCPs expect patients to be forthcoming about their symptoms and daily challenges, people living with MG, on the other hand, anticipate HCPs to ask insightful questions to uncover these issues. This gap can lead to misunderstandings and unmet needs in the care of people with MG.
• Differing Priorities: Although HCPs are knowledgeable about MG and its symptoms, there is a divergence in how people living with MG and HCPs perceive the impact of these symptoms on daily life. This difference in perception can influence treatment plans and patient satisfaction.
• Improving Shared Decision-Making: The study underscores the importance of fostering effective communication strategies to support shared decision-making. Better dialogue between patients and HCPs can lead to more personalized and effective care, ultimately improving patient outcomes.
   

The Path Forward
The insights gained from this study are invaluable as we strive to bridge the communication gap in MG care. By enhancing the understanding between those living with MG and HCPs, we can pave the way for more empathetic, tailored and effective treatment approaches. The ENGAGE program's first phase findings are a stepping stone toward achieving this goal and it informed the design of the VR learning intervention and the outcomes of the ENGAGE program (Phases 2 and 3).

Explore the full publication for a comprehensive understanding of our findings and their implications for care in MG. Together, we can make a difference in the lives of those living with MG by transforming the way we communicate and collaborate in healthcare.