Objective:

To gain consensus from healthcare providers (HCPs) on the most impactful and implementable solutions to address the patient-identified unmet needs of the generalized myasthenia gravis (gMG) community.

Background:

Our prior research with patients, caregivers, and patient advocates identified substantial unmet needs for the gMG community, which persist despite advances in treatment. These include delays in diagnosis, lack of recognition of the disease by HCPs, and barriers to accessing supportive networks and care. The prior research identified 13 potential evidence-based solutions to these unmet needs related to disseminating education and educational materials and broadening access to care, resources, and support. 

Design/Methods:

A comprehensive two-round Delphi survey was conducted. In Round 1, participants rated their level of agreement on each solution’s suitability to address its associated unmet needs, provided the rationale for their assessment, and listed potential implementation challenges. In Round 2, participants re-evaluated those solutions, considering the synthesized insights from Round 1.

Results:

A total of 23 HCPs (neurologists, nurse practitioners/nurses in a neurology setting, and primary care physicians) with experience treating and managing patients with gMG in the United States completed Rounds 1 and 2. Consensus (≥70% agreement) was achieved for all 13 proposed solutions with low-to-moderate variance. The solutions spanned areas such as improving diagnostic accuracy, enhancing patient support systems, and fostering multidisciplinary care approaches. The solutions with the highest consensus focused on addressing barriers to support networks and care, including increasing access and reducing wait times for neuromuscular specialists along with caregiver-focused support.

Conclusions:

The consensus reached validates the patient-identified unmet needs and the viability of the proposed solutions. These findings highlight critical areas for intervention and underscore the necessity of implementing these solutions to enhance the quality of life for patients with gMG and their caregivers.