Project Title

Patient Global Impression of Severity for Mitochondrial Disease

The Challenge

The original PRO instrument had a high "respondent burden" or confusing medical jargon according to a third of the respondents.

My Role

Lead Interviewer and Qualitative Analyst.

The Methodology

Iterative rounds of 1:1 semi-structured interviews; thematic analysis.

Key Insights

Patients struggled with abbreviations and names of conditions that the instrument used. Some even suggested that they could tell that the instrument was developed by someone outside the community.

The Impact

Revised instrument ready for licensing, grammatical corrections based on patients’ insights and increased acceptance rate among relevant audiences.