Design of and Early Insights From a Generalized Myasthenia Gravis Patient Engagement Research Council.

ABSTRACT:

Background and aims

An exploratory focus group study was conducted to better understand the needs of patients living with generalized myasthenia gravis (gMG).

Methods

US-based adults with gMG and caregivers of patients with gMG participated in a Patient Engagement Research Council between August 2022 and January 2023. The study consisted of a 15-min prework survey, followed by virtual focus groups facilitated using a semi-structured interview guide. Data concepts were identified using conversational analysis and by direct observation. All transcripts were coded based on concepts using a qualitative research analysis program (MaxQDA).

Results

16 participants (13 patients, three caregivers) were recruited. Participants reported impact on daily activities, fatigue, and p

SUBMITTER: Geonnotti G 

PROVIDER: S-EPMC11652384 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature