TY - JOUR
T1 - Mapping Relevance of Digital Measures to Meaningful Symptoms and Impacts in Early Parkinson's Disease
AU - Mammen, Jennifer R.
AU - Speck, Rebecca M.
AU - Stebbins, Glenn M.
AU - Müller, Martijn L.T.M.
AU - Yang, Phillip T.
AU - Campbell, Michelle
AU - Cosman, Josh
AU - Crawford, John E.
AU - Dam, Tien
AU - Hellsten, Johan
AU - Jensen-Roberts, Stella
AU - Kostrzebski, Melissa
AU - Simuni, Tanya
AU - Barowicz, Kimberly Ward
AU - Cedarbaum, Jesse M.
AU - Dorsey, E. Ray
AU - Stephenson, Diane
AU - Adams, Jamie L.
N1 - Funding Information:
This study was funded by Critical Path for Parkinson’s (CPP). The CPP 3DT initiative is funded by the Critical Path for Parkinson’s Consortium members including: Biogen; GSK; Takeda; Lundbeck; UCB Pharma; Roche; AbbVie and Merck, Parkinson’s UK, and the Michael J Fox Foundation. Critical Path Institute is supported by the Food and Drug Administration (FDA) of the U.S. Department of Health and Human Services (HHS). Critical Path Institute is supported by the Food and Drug Administration (FDA) of the U.S. Department of Health and Human Services (HHS) and is 54.2% funded by the FDA/HHS, totaling $13,239,950, and 45.8% funded by non-government source(s), totaling $11,196,634. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, FDA/HHS or the U.S. Government.
Publisher Copyright:
© 2023-The authors. Published by IOS Press.
PY - 2023/6/13
Y1 - 2023/6/13
N2 - 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.
AB - 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.
KW - Parkinson's disease
KW - digital health technology
KW - meaningfulness
KW - patient experience data
KW - qualitative
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U2 - 10.3233/JPD-225122
DO - 10.3233/JPD-225122
M3 - Article
C2 - 37212073
AN - SCOPUS:85163388181
SN - 1877-7171
VL - 13
SP - 589
EP - 607
JO - Journal of Parkinson's disease
JF - Journal of Parkinson's disease
IS - 4
ER -