Mapping Relevance of Digital Measures to Meaningful Symptoms and Impacts in Early Parkinson's Disease

Jennifer R. Mammen*, Rebecca M. Speck, Glenn M. Stebbins, Martijn L.T.M. Müller, Phillip T. Yang, Michelle Campbell, Josh Cosman, John E. Crawford, Tien Dam, Johan Hellsten, Stella Jensen-Roberts, Melissa Kostrzebski, Tanya Simuni, Kimberly Ward Barowicz, Jesse M. Cedarbaum, E. Ray Dorsey, Diane Stephenson, Jamie L. Adams

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Background: Adoption of new digital measures for clinical trials and practice has been hindered by lack of actionable qualitative data demonstrating relevance of these metrics to people with Parkinson's disease. Objective: This study evaluated of relevance of WATCH-PD digital measures to monitoring meaningful symptoms and impacts of early Parkinson's disease from the patient perspective. Methods: Participants with early Parkinson's disease (N = 40) completed surveys and 1:1 online-interviews. Interviews combined: 1) symptom mapping to delineate meaningful symptoms/impacts of disease, 2) cognitive interviewing to assess content validity of digital measures, and 3) mapping of digital measures back to personal symptoms to assess relevance from the patient perspective. Content analysis and descriptive techniques were used to analyze data. Results: Participants perceived mapping as deeply engaging, with 39/40 reporting improved ability to communicate important symptoms and relevance of measures. Most measures (9/10) were rated relevant by both cognitive interviewing (70-92.5%) and mapping (80-100%). Two measures related to actively bothersome symptoms for more than 80% of participants (Tremor, Shape rotation). Tasks were generally deemed relevant if they met three participant context criteria: 1) understanding what the task measured, 2) believing it targeted an important symptom of PD (past, present, or future), and 3) believing the task was a good test of that important symptom. Participants did not require that a task relate to active symptoms or 'real' life to be relevant. Conclusion: Digital measures of tremor and hand dexterity were rated most relevant in early PD. Use of mapping enabled precise quantification of qualitative data for more rigorous evaluation of new measures.

Original languageEnglish (US)
Pages (from-to)589-607
Number of pages19
JournalJournal of Parkinson's disease
Issue number4
StatePublished - Jun 13 2023


  • Parkinson's disease
  • digital health technology
  • meaningfulness
  • patient experience data
  • qualitative

ASJC Scopus subject areas

  • Clinical Neurology
  • Cellular and Molecular Neuroscience


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