JMIR Publications

ABSTRACT

Background:

Parkinson’s disease can impose significant distress and costs on patients, families and caregivers, and healthcare systems. To address these burdens for families and the healthcare system, there is a need to better support patient self-management. To achieve this, there is a need for an overview of the current state of the literature on self-management, to identify what is being done, how well it is working, and what might be missing.

Objective:

The purpose of this scoping review is to provide an overview of the current body of research on self-management interventions for people with Parkinson’s disease and to identify any knowledge gaps.

Methods:

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) and Population, Intervention, Comparator, Outcome, and Study (PICOS) frameworks were used to structure the methodology of the review. One reviewer systematically searched four databases (PubMed, Ovid, Scopus, and Web of Science) for evaluations of self-management interventions for Parkinson’s published in English. The references were screened using the EndNote X9 citation management software, titles and abstracts were manually reviewed, and studies were selected for inclusion based on the eligibility criteria. Data was extracted into a pre-established form and synthesised in a descriptive analysis.

Results:

There was variation among the studies on study design, sample size, intervention type, and outcomes measured. The randomised controlled trials had the strongest evidence of effectiveness: 5/8 randomised controlled trials found a significant difference between groups favouring the intervention on their primary outcome, and the remaining three had significant effects on at least some of the secondary outcomes. The two interventions for mental health outcomes found significant changes over time, and the three algorithms evaluated performed well. The remaining studies examined patient perceptions, acceptability, and cost-effectiveness, and found generally positive results.

Conclusions:

This scoping review identified a wide variety of interventions designed to support various aspects of self-management for people with Parkinson’s disease. The studies all generally reported positive results, and although the strength of the evidence varied, this suggests that self-management interventions are promising for improving the care and outcomes of people with Parkinson’s. However, the research tended to focus on the motor aspects of Parkinson’s, with few non-motor or holistic interventions, and there was a lack of evaluation of cost-effectiveness. This research will be important to providing self-management interventions that meet the varied and diverse needs of people with Parkinson’s and to determining which interventions are worth promoting for widespread adoption.