Study Rationale: Parkinson’s disease (PD) is a devastating neurologic disease and current treatments are unable to prevent the worsening of symptoms. One problem in developing new therapies has been an inability to monitor PD symptoms precisely enough to tell if early disease treatments are working. New wearable digital devices could overcome this challenge by allowing for objective, frequent and remote assessment of symptoms and treatment effectiveness. To facilitate the development of effective treatments, however, these digital devices would have to monitor symptoms that are bothersome and important to people with early PD.
Hypothesis: We hypothesize that digital measures monitored in the WATCH-PD study (a multicenter trial that evaluated digital health technologies in individuals with early, untreated PD) will provide information about symptoms that are important from the perspective of people with PD.
Study Design: We will systematically identify bothersome symptoms and their effect on quality of life in people with early PD, and we will track how these symptoms change over time for two consecutive years after a baseline evaluation. To do this, we will conduct online surveys and on-on-one online qualitative interviews with 40 people with PD. Interviews will use digital symptom mapping to identify all personal symptoms of PD and how the individual is affected. Lastly, we will ask participants to evaluate the usefulness of ten different smartphone application tasks used in WATCH-PD in monitoring their own symptoms.
Impact on Diagnosis/Treatment of Parkinson’s disease: This project will help us understand which aspects of PD are most bothersome and important from the patient perspective, how bothersome symptoms and impacts change over time and how these relate to the digital measures used in WATCH-PD.
Next Steps for Development: Results from this study will be used to inform the use of digital measures in clinical trials for PD and support more objective, precise, and patient-centered measures of PD. This focus on how individuals experience PD will facilitate more efficient and meaningful evaluation of future PD therapies.