Abstract
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.BACKGROUNDLongitudinal 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.To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson's.OBJECTIVETo evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson's.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.METHODSIn-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.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%).RESULTSOther 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%).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.CONCLUSIONNon-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.