The Lived Experience of Myasthenia Gravis (MG): A Patient-led Analysis
Kelly Davio1, Nancy Law2, Melissa Blunck3, Kenza Seddik3
1MG patient advocate, 2The Myasthenia Gravis Foundation of America, 3UCB Pharma
Objective:
To reveal the lived experience of MG from the patient perspective.
Background:

There is little published data on the patient perspective of how MG impacts life. Understanding the reality of living with MG may provide insights that can improve management and outcomes for patients.

Design/Methods:

This qualitative analysis was led by an international patient global council (PGC) comprising 9 individuals living with MG who serve as local/national patient advocates in 7 countries (Europe and US). Insights into the lived experience of MG were consolidated from various sources (literature review; qualitative research study of 54 MG patients/carers from 7 countries; a previous PGC meeting [September 2019]). Insights were prioritised by the PGC and discussed in depth in a virtual workshop (August 2020). Representative experiences were articulated by the authors in a series of consensus statements.

Results:

114 insights were identified and organised into 9 domains: physical (13); psychological (22); social (8); activities and participation (14); reproduction (5); controlled/inadequately controlled (15); flare-ups and myasthenic crises (9); treatment burden (13); and unmet needs (15). 5 insights per domain were prioritised for discussion.

The discussion was consolidated into consensus statements, which describe the lived experience of MG. Several important themes emerged, including:

  • Constantly adapting activities and life due to the fluctuating and unpredictable nature of MG
  • Making sacrifices and trade-offs in many aspects of life including disease, treatment and quality of life
  • Perceived differences between patients and their HCPs regarding optimal symptom control and quality of life.
Conclusions:

This patient-driven analysis enriches our understanding of the reality of living with MG. The consensus statements developed provide insights to enable HCPs to improve the management of their patients with MG.