Improving Care Experiences of Patients with Myasthenia Gravis

Patients living with MG—which weakens muscles required for voluntary function—and their physicians face significant challenges managing and treating the condition. The client wanted to support better disease management by assessing needs, challenges, and barriers that patients with MG and their clinicians face, and by determining how to meet those needs.

We determined what actions the client had already taken and then conducted multi-methods research to identify unmet patient needs. We completed a literature review and a scan of professional societies and patient advocacy organizations and then conducted semi-structured interviews with patients and MG specialists.

We tailored our research design to gain insight into:

• Patient values and preferences
• Factors impacting patient preferences
• Physician attitudes toward shared decision making
• Patient and caregiver involvement in shared decision making
• Gaps that undermine patient engagement and empowerment

Our research revealed several factors affecting the patient experience of receiving care for MG:

• Patients generally neither know about nor have access to existing MG tools and resources.
• Patient experiences vary depending on the providers and educational resources those patients can access.
• Patients who engage proactively in their care process generally report better care experiences because MG diagnosis and treatment processes vary considerably by patient.
• Patients generally prioritize addressing MG holistically and improving quality of life, but existing patient support tools do not adequately address these priorities.

We developed an outline for an MG patient tool that would organize resources as modules centered on specific points throughout the patient care process. The outline proposes a format for the tool, includes sample questions to be covered, and provides guidance on how patients and providers can use the tool.

Our findings indicated that a patient tool could be useful in improving care, but they also suggested that adoption would require buy-in from patients and providers. We created a roadmap of activities that the client could use to expand tool usage, including activities to promote adoption and identify potential partners for testing the tool.

The client shared our findings and insights with internal teams as they considered developing a patient engagement tool for improving MG treatment and management based on our outline.