KINGSTON, R.I. — Dec. 20, 2022 — Parkinson’s disease is a devastating and progressive neurologic disease that affects upwards of 1 million people in the United States. Current treatments are unable to stop disease progression, partly due to an inability to monitor Parkinson’s symptoms precisely enough to tell if early treatments are working.
A study conducted by researchers at the University of Rochester and University of Rhode Island College of Nursing, and funded by The Michael J. Fox Foundation for Parkinson’s Research, aims to identify which specific symptoms are most bothersome and important to people with Parkinson’s, and assess the relevance of digital measures from a smartphone application and smartwatch from the patient perspective.
The current study is being conducted as a follow-up to the nationwide WATCH-PD study, which was led by the University of Rochester’s Center for Health and Technology. The digital study evaluated the ability of sensor-based technology to track symptom progression in early, untreated Parkinson’s disease. However, it was unclear if the technology was monitoring symptoms that were important to people with the condition.
Through online surveys and one-on-one qualitative interviews with 40 people with Parkinson’s, Assistant Professor Jennifer Mammen will systematically identify bothersome symptoms and impacts, and monitor how the symptoms change in people with early Parkinson’s disease during the two years of the study. Mammen and co-Principal Investigator Jamie Adams, Associate Professor of Neurology at the University of Rochester, will also assess if the smartphone application and smartwatch used in the WATCH-PD study are viewed as able to monitor important symptoms from the patient perspective.
“Qualitative interviews will be used to explore symptom experiences that are important to the participant, how symptoms impact activities of daily living and physical functioning, and changes in meaningful symptoms over time,” Mammen wrote in the current project summary. “Additionally, interviews will assess if the digital technologies used in the WATCH-PD study are viewed as relevant to monitor important symptoms from the patient perspective.”
Mammen and Adams, with support from the Critical Path for Parkinson’s 3DT Consortium, have been pioneering new hybrid data collection techniques that can enable researchers to collect qualitative patient experience data in a way that is simultaneously quantifiable. The technique developed for the study—symptom mapping—is an interactive approach in which the researcher and participant co-create a diagram of the individual’s symptom experience using mind mapping software, with symptoms ordered from most to least bothersome, and detailed descriptions of what makes symptoms bothersome and how the individual is personally affected.
The symptom mapping technique, which was recently presented at the Parkinson’s disease Endpoints Roundtable in Washington, D.C. (hosted by MJFF, Parkinson’s UK, and Parkinson’s Canada), is gaining recognition globally with leading researchers and government and funding agencies as a means to address long-standing challenges to integrate qualitative data into drug and device development.
“Results from this study will inform the use of digital measures in clinical trials for Parkinson’s and support more objective, precise and patient-centered measures,” Mammen said. “This can facilitate more efficient and meaningful evaluation of future Parkinson’s therapies. Additionally, new hybrid methodology could represent a major shift in how we approach qualitative research to better support future patient-focused drug and device development.”