Self-management systems for Patients and Clinicians in Parkinson’s care: Protocol for an integrated Scoping Review, Product Search and Evaluation (Preprint)

Abstract

Parkinson's disease poses emotional and financial challenges on patients, families, caregivers, and healthcare systems. Self-management systems show promise in empowering people with Parkinson's and enabling more control over their treatment. The collaborative nature of Parkinson's care requires communication between patients and healthcare professionals. While past reviews explored self-management systems in Parkinson’s disease diagnosis and symptom management with a focus on patient portals, there is limited research addressed the interconnectivity of systems catering to both patients’ and clinicians' needs. A system's acceptability and usability for clinicians are pivotal for enabling comprehensive data collection and supporting clinical decision-making, which can enhance patient care and treatment outcomes.

This review aims to assess Parkinson's disease self-management systems that include a clinician portal and to determine which features enhance acceptability and usability for clinicians. The primary aim is to assess evidence of clinicians’ acceptability and usability of self-management systems with a focus on the integration of systems into clinical workflows, data collection points, monitoring, clinical decision-making support, and extended education and training.

The review will entail three separate stages: a literature review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, a product search, and an evaluation of the level of evidence for the identified products. For the first stage, six databases will be searched: PubMed, CINAHL, Scopus, ACM digital library, IEEE Xplore and EBSCO. Studies eligible for inclusion will be qualitative, quantitative, and mixed-methods studies examining patients’ and clinician’s perceptions of the acceptability and usability of digital health interventions, synthesised by a narrative qualitative analysis. A web search in the iOS Apple App Store and Android Google Play Store will identify currently available tools; the level of evidence for these will then be assessed using the Oxford Centre for Evidence-Based Medicine guidelines.

The review will be executed in August 2024.

This review will examine currently available self-management systems in Parkinson's care, focusing on their acceptability and usability. This is significant because there is limited research addressing the integration of clinicians into these systems. Findings from this study may provide critical knowledge and insight to help inform future research and will contribute to the design of self-management systems that promote collaborative efforts in Parkinson's disease care.

This review was conducted as a scoping study protocol and has not been registered as a clinical trial.