Background: Longitudinal qualitative data on what matters to people with Parkinson's disease are lacking and needed to guide patient-centered clinical care and development of outcome measures.
Objective: To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson's.
Methods: In-depth, online symptom mapping interviews were conducted with 33 people with early Parkinson's at baseline and 1 year later to evaluate (A) symptoms, (B) impacts, and (C) relevance of digital measures to monitor personally relevant symptoms. Maps and transcripts were coded for frequencies, Likert scale rankings (0 = not present to 4 = most bothersome), and thematic findings. Wilcoxon Signed Rank test was used to evaluate change over time.
Results: Other than walking and balance, most motor symptoms did not change significantly from baseline to 1 year later. Multiple significant changes were observed in non-motor areas (cognition, speech, sleep, mood, fatigue, pain; p < 0.05) and functional impacts (mobility, effort to do usual activities, personal comfort; p < 0.05). Thematic analysis revealed ability to cope with and compensate for actual or anticipated symptoms reduced disruptions to well-being and changed how bothersome symptoms were. All digital measures targeted symptoms that were personally important to most participants (> 80%).
Conclusion: Non-motor and walking/balance symptoms changed sooner than other motor symptoms during the course of 1 year. Evaluation of coping and compensatory mechanisms may be essential to understanding symptom bothersomeness at a given point in time. Smartphone and smartwatch digital measures were relevant to personally meaningful symptoms of early PD.
Keywords: Digital health technology; Parkinson’s; Patient experience; Qualitative; Symptoms.
© 2024. The Author(s).