Journal of neurology · 2025
Longitudinal qualitative assessment of meaningful symptoms and relevance of WATCH-PD digital measures for people with early Parkinson's.
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Mammen Jennifer R, Lerner Aaron, Al-Rubayie Raunak, Kostrzebski Melissa, Stephenson Diane, Xiao Yuge, Redmond Chris, Tyo Mirinda, Reddy Varun G, Auinger Peggy, Dorsey E Ray, Adams Jamie L
Аннотация
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.
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.