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. 2024;14(7):1387-1404.
doi: 10.3233/JPD-240137.

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

Selina Boege  1   2 , Madison Milne-Ives  1   2 , Ananya Ananthakrishnan  1 , Camille Carroll  1   3 , Edward Meinert  1   4   5
Affiliations

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

Selina Boege et al. J Parkinsons Dis. 2024.

Abstract

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.

Keywords: Parkinsonian disorders; Parkinson’s disease; digital health; self-management; telemedicine.

Plain language summary

Digital tools, such as smartphone applications and wearable devices, could help people with Parkinson’s disease manage their symptoms by using data and technology to provide support that is personalized to them and by supporting communication between patients and healthcare providers. This review studies current literature on these digital self-management systems for people with Parkinson’s disease. Of the 33 studies included in our review, we found that many of these systems combine different types of digital technologies (for example, a mobile app and a wearable sensor). The most common strategies to help support patients with self-management included in these digital tools were providing educational health content and symptom diaries. Only a few studies have considered healthcare providers’ perspectives on these systems. Those that did highlighted a need for better access to patient data, improved data presentation, and summaries of key health insights. While patients find digital self-management tools favorable, further research is needed to ensure they meet healthcare providers’ professional needs and can fit easily into daily clinical routines, ultimately improving care for individuals with Parkinson’s disease.

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Conflict of interest statement

Camille Carroll is an Editorial Board member of this journal but was not involved in the peer-review process of this article nor had access to any information regarding its peer review. The other authors have no conflict of interest to report.

Figures

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Fig. 1
PRISMA flow chart.
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