Date of Original Version
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.
Mammen, Jennifer R., and et al.. "Mapping meaningful symptoms and impacts of early Parkinson's disease to digital outcome measures." , (2022). https://digitalcommons.uri.edu/nursing_facpubs/343