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Background: Digital health technologies have the potential to capture fine variations in symptoms across a range of diseases. However, it is not clear whether these measures are meaningful to patients, which is critical to guiding the selection of digital endpoints.

Objective: This manuscript describes novel methodology for mapping meaningful symptoms and impacts of disease and assessing personal relevance of digital measures from the patient perspective. Methods: Participants with early Parkinson’s from the WATCH-PD study [NCT03681015] completed online surveys (N=65), with a subset recruited for 1:1 online video-interviews (N=40) to explore symptoms, impacts and perceived relevance of selected digital measures. Interviews included: (1) symptom mapping to delineate and rank meaningful symptoms/impacts of Parkinson’s, (2) cognitive interviewing on digital measures administered in the WATCH-PD study, and (3) mapping of these measures back to the personal symptom map to show relevance from the patient perspective. Content coding was used to assess frequencies and bothersomeness of symptoms/impacts, and perceived relevance of the technology. Thematic analysis was performed for narrative transcripts. Copies of maps were shared with participants.

Results: This approach was deeply engaging and satisfying to participants, who reported improved ability to describe and discuss their symptom experiences. Maps and interviews provided detailed qualitative data on symptoms/impacts of early Parkinson’s with concurrent ability to quantify symptom frequencies and bothersomeness along with perceived relevance of the digital measures.

Conclusion: Combining symptom mapping with cognitive interviewing can improve understanding of meaningful symptoms and impacts of disease and perceived relevance of digital measures from the patient perspective.