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Table 1 Information sources used to gain patient insights on the lived experience of MG

From: Evaluation of the quality of patient involvement in a patient-led analysis of the lived experience of a rare disease

Source

 

Global qualitative research study

Qualitative research study of 54 people with MG or their carers from seven countries

Objective was to extract patient insights and quotes that focused on the ongoing management of people receiving treatment for MG

Conducted by external researchers (Branding Science Ltd) on behalf of UCB Pharma using web-assisted telephone or in-home individual interviews

Literature review

32 peer-reviewed research publications, one newsletter and one book, that present patient-reported outcomes or experiences of living with MG

Researchers searched the peer-reviewed literature, predetermined patient and sociology journals and gray literature

Two researchers screened articles for relevance to identify information relating to patient experience or patient-reported outcomes

International MG patient council meeting report

Discussions among six council members living with MG

Detailed discussions among patient council members who lived with MG and were patient advocates in their local communities

Extracted insights from the meeting report that were not already captured in the qualitative research study

  1. MG myasthenia gravis
  2. Further details of these data sources are provided in the Electronic Supplementary Material in the published patient-led analysis article [12]