Self-Management Systems for Patients and Clinicians in Parkinson's Disease Care: A Scoping Review

Background: Digital self-management tools including mobile apps and wearables can enhance personalized care in Parkinson's disease, and incorporating patient and clinician feedback into their evaluation can empower users and nurture patient-clinician relationships, necessitating a review to assess the state of the art and refine their use. Objective: This review aimed to summarize the state of the art of self-management systems used in Parkinson's disease management, detailing the application of self-management techniques and the integration of clinicians. It also aimed to provide a concise synthesis on the acceptance and usability of these systems from the clinicians' standpoint, reflecting both patient engagement and clinician experience. Methods: The review was organized following the PRISMA extension for Scoping Reviews and PICOS frameworks. Studies were retrieved from PubMed, CINAHL, Scopus, ACM Digital Library, and IEEE Xplore. Data was collected using a predefined form and then analyzed descriptively. Results: Of the 15,231 studies retrieved, 33 were included. Five technology types were identified, with systems combining technologies being the most evaluated. Common self-management strategies included educational material and symptom journals. Only 11 studies gathered data from clinicians or reported evidence of clinician integration; out of those, six studies point out the importance of raw data availability, data visualization, and integrated data summaries. Conclusions: While self-management systems for Parkinson's disease are well-received by patients, the studies underscore the urgency for more research into their usability for clinicians and integration into daily medical workflows to enhance overall care quality.