Conceptualization, Measurement, and Factors Associated with Participation in Parkinson's Disease: A Systematic Review and Qualitative Analysis

Objective: This systematic review aims to examine the conceptualization and measurement of participation among people with Parkinson's disease (PD) and the factors, such as facilitators and barriers, linked to participation in this population.

Data sources: PubMed/MEDLINE, EMBASE, SCOPUS, Web of Science, APA PsycInfo, CINAHL, Cochrane Library, and Clinicaltrials.gov from inception to July 2022.

Study selection: Studies were screened using primary inclusion criteria of peer-reviewed articles that measure participation in adults with PD.

Data extraction: The reviewers independently assessed quality using the Mixed Methods Appraisal Tool and extracted data regarding sample characteristics, study design, country, properties of assessments, and factors examined in relation to participation.

Data synthesis: Out of 64,427 records, we included 36 articles. Among them, less than half explicitly defined participation, and those articles used four different participation-related terms. Eighteen different assessments have been used to measure participation, and 56% of them were originally developed to measure constructs other than participation. Among aspects of participation assessed by the evaluation tools, participation problem was the most frequently measured, followed by participation accomplishment and satisfaction with participation. Many impairment-level factors, including disease severity, depression, and cognition, were found to be associated with participation.

Conclusions: Participation is a central concept and important outcome in the field of rehabilitation. This systematic review provides a summary and synthesis of the existing quantitative studies on participation among people with PD. It identified inconsistencies in the conceptualization and measurement of participation across studies. Additionally, the aspect of satisfaction with participation and the association of environmental (or social) factors with participation have received relatively little attention. Future research should investigate satisfaction with participation, examine the impact of environmental factors on participation, and include longitudinal studies to better understand participation in individuals with PD.