1. What Patients Say: Large-Scale Analyses of Replies to the Parkinsons Disease Patient Report of Problems (PD-PROP).
- Author
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Marras, Connie, Arbatti, Lakshmi, Hosamath, Abhishek, Amara, Amy, Anderson, Karen, Chahine, Lana, Eberly, Shirley, Kinel, Dan, Mantri, Sneha, Mathur, Soania, Oakes, David, Purks, Jennifer, Standaert, David, Weintraub, Daniel, Shoulson, Ira, and Tanner, Caroline
- Subjects
Parkinson’s disease ,Patient-reported outcome ,machine learning ,measurement ,Male ,Humans ,Aged ,Female ,Parkinson Disease ,Cohort Studies ,Tremor ,Algorithms ,Machine Learning - Abstract
BACKGROUND: Free-text, verbatim replies in the words of people with Parkinsons disease (PD) have the potential to provide unvarnished information about their feelings and experiences. Challenges of processing such data on a large scale are a barrier to analyzing verbatim data collection in large cohorts. OBJECTIVE: To develop a method for curating responses from the Parkinsons Disease Patient Report of Problems (PD-PROP), open-ended questions that asks people with PD to report their most bothersome problems and associated functional consequences. METHODS: Human curation, natural language processing, and machine learning were used to develop an algorithm to convert verbatim responses to classified symptoms. Nine curators including clinicians, people with PD, and a non-clinician PD expert classified a sample of responses as reporting each symptom or not. Responses to the PD-PROP were collected within the Fox Insight cohort study. RESULTS: Approximately 3,500 PD-PROP responses were curated by a human team. Subsequently, approximately 1,500 responses were used in the validation phase; median age of respondents was 67 years, 55% were men and median years since PD diagnosis was 3 years. 168,260 verbatim responses were classified by machine. Accuracy of machine classification was 95% on a held-out test set. 65 symptoms were grouped into 14 domains. The most frequently reported symptoms at first report were tremor (by 46% of respondents), gait and balance problems (>39%), and pain/discomfort (33%). CONCLUSION: A human-in-the-loop method of curation provides both accuracy and efficiency, permitting a clinically useful analysis of large datasets of verbatim reports about the problems that bother PD patients.
- Published
- 2023