Study Rationale:
What people with Parkinson’s feel and experience about their disease, and how it affects their lives, is of paramount importance to their care and participation in research. The patient experience is typically reported by questionnaires that offer categories of possible replies to specific questions (e.g., check boxes or pull-down menus). The Parkinson’s Disease Patient Report of Problems (PD-PROP) asks patients open-ended questions about their most bothersome problems and how these problems affect their daily functioning to gather broader data and better understand how patients talk about their disease.
More than 25,000 people with Parkinson’s in the Michael J. Fox Foundation-sponsored Fox Insight online study have replied to the PD-PROP questions. A team of clinical experts (curators) reviewed the verbatim reports and classified them into a total of 56 clinically meaningful symptoms, representing four motor and six non-motor domains. Data science techniques such as natural language processing and machine learning (algorithms) were applied to generate a profile of symptoms that portrays the clinical features and course of Parkinson’s as reported directly by patients.
Hypothesis:
An improved and expanded review of PD-PROP narratives will enable a more precise, standardized, efficient, and clinically meaningful analysis of what patients report in their own words.
Study Design:
The new curation research project will make PD-PROP analyses more precise, clinically meaningful and efficient by: (1) refining definitions of terms and algorithm labeling, especially for non-motor symptoms; (2) expanding the reviewer team (curators) to include people with Parkinson’s (experience experts) as well as clinical experts; (3) developing an automated process to facilitate workflow; and (4) providing an updatable data dictionary and PD-PROP output to share with researchers on the Fox Insight open-access data platform FoxDEN.
Impact on Diagnosis/Treatment of Parkinson’s Disease:
This project may identify previously unrecognized symptoms or experiences that are bothersome to people with Parkinson’s, expressed through their verbatim narratives. These data will produce a patient-reported natural history of the disease that can be analyzed at baseline and over time and applied to improve clinical care and research.
More information on how people with Parkinson’s perceive their symptoms and their impact could help doctors have conversations on those symptoms and adjust treatments for better outcomes. And, in research, more studies could focus on patients’ most bothersome symptoms, and the assessments used in those studies could reflect the disease experience as described by people with Parkinson’s disease.
Next Steps for Development:
PD-PROP is a basic clinical tool that is being applied more broadly and efficiently to amplify the voice of the patient, identify unrecognized and unmet patient needs, characterize a patient-reported natural history, and provide meaningful outcomes for clinical trials of treatments aimed at favorably altering the course of PD. The availability of this data dictionary in FoxDEN will speed these findings.