Generalized myasthenia gravis (gMG) is a rare autoimmune disease of the neuromuscular junction affecting approximately 200 per 1 million people. It is characterized by muscle weakness and fatiguability that varies in severity and affected muscle group. Symptoms are progressive throughout the day, requiring hospitalization in severe cases.

This research aimed to (1) characterize the most relevant signs, symptoms, and impacts of the patient experience with gMG; (2) establish the conceptual model of the patient experience with gMG, and (3) explore the content validity for existing clinical outcome assessments.

This research emphasizes the voice of the patient, highlighting the everyday experience of adult patients with gMG; seven new signs and symptoms and 37 new impacts were identified, and the most salient signs, symptoms, and impacts were identified.

The disease conceptual model was updated to give a holistic, visual representation of gMG. Clinical outcome assessments were found to be clinically relevant, with no missing elements.

These findings may aid in informing a patient-centric and holistic measurement strategy within future research, clinical practice, and/or patient interventions.