Surveying Global Nursing Needs for Patients With Generalized Myasthenia Gravis: Amy Perrin Ross, APN, MSN, CNRN, MSCN

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"We found that basically, regardless of what part of the world you’re from, there’s very little for nurses. There’s very little education. We also explored who’s actually doing the care for people with [generalized myasthenia gravis] from a nursing perspective, and that varies widely as well."

Nurses with specialized knowledge can have an integral and multifaceted role in delivering coordinated care and support for patients, especially for those living with a heterogeneous disease such as myasthenia gravis (MG). Findings from a recent global survey presented at the 2025 American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) meeting, held October 29 to November 1, in San Francisco, California, by lead author Amy Perrin Ross, APN, MSN, CNRN, MSCN, revealed the educational needs of nurses caring for adults with MG in 5 overarching themes.¹

In the survey study, researchers performed 1-hour semi-structured interviews with 6 nurses who have specialized knowledge of MG and conducted a literature search to address the question, “What are the key learning and practice needs of nurses involved in the treatment and management of MG?” Authors noted that interviews were analyzed using principles of thematic analysis. The literature search used 4 databases and identified articles published since 2018 using the terms “myasthenia gravis” and “nurse.” Retrieved articles were reviewed to identify system, practice, knowledge, and skills gaps and, where possible, were mapped to the interview themes.

In an interview with CGTLive®, our sister publication, Perrin Ross, neuroscience program coordinator at Loyola University Medical Center, discussed the limited resources and education for nurses worldwide, revealed through the survey study. Additionally, she talked about the key areas of need including understanding the disease’s pathophysiology, symptoms, comorbidities, treatments, and identifying clinical red flags. She broke down how, in response, the steering committee developed 1-page, double-sided fact sheets to support nurses globally, with ongoing efforts to translate them for broader accessibility.

Editor’s Note: Perrin Ross has disclosed that she has received personal compensation for serving as a consultant for Alexion Pharmaceuticals, Amgen, BMS, EMD, Serono, Genentech, Novartis, Roche, Sanofi, TG Therapeutics and UCB.

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REFERENCES
1. Ross AP, Burke G, Carmichael C, et al. Z Educational Needs Assessment of Nurses Involved in the Care of Patients with Myasthenia Gravis. Presented at: 2025 AANEM; October 29 to November 1; San Francisco, California. Abstract 234.