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Self-Management Systems for Patients and Clinicians in Parkinson Care: Protocol for an Integrated Scoping Review, Product Search, and Evaluation

Lookup NU author(s): Selina Boege, Madison Milne-Ives, Professor Edward MeinertORCiD, Professor Camille CarrollORCiD

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

©Selina Boege, Madison Milne-Ives, Edward Meinert, Camille Carroll.Background: Parkinson disease (PD) poses emotional and financial challenges to patients, families, caregivers, and health care systems. Self-management systems show promise in empowering people with PD and enabling more control over their treatment. The collaborative nature of PD care requires communication between patients and health care professionals. While past reviews explored self-management systems in PD diagnosis and symptom management with a focus on patient portals, there is limited research addressing the interconnectivity of systems catering to the needs of both patients and clinicians. 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. Objective: This review study aims to assess PD 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. Methods: The review will entail 3 separate stages: a literature review following the PRISMA-ScR (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, 5 databases will be searched: PubMed, CINAHL, Scopus, ACM digital library, and IEEE Xplore. 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, synthesized 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. Results: Literature search and screening began soon after submission of the protocol, and the review is expected to be completed by end of September 2024. Conclusions: This review will examine currently available self-management systems in PD care, focusing on their acceptability and usability. This is significant because there is limited research addressing the integration of clinicians into these systems. The 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 PD care.


Publication metadata

Author(s): Boege S, Milne-Ives M, Meinert E, Carroll C

Publication type: Article

Publication status: Published

Journal: JMIR Research Protocols

Year: 2024

Volume: 13

Online publication date: 24/09/2024

Acceptance date: 01/08/2024

Date deposited: 11/02/2025

ISSN (print): 1929-0748

Publisher: JMIR Publications Inc.

URL: https://doi.org/10.2196/58845

DOI: 10.2196/58845


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Funding

Funder referenceFunder name
Parkinson’s UK Non-Drug Awards Programme (grant NDA-21)

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