A systematic review of instruments assessing participation: challenges in defining participation.

Objectives: To evaluate: (1) whether instruments which intend to measure participation actually do and (2) how frequently specific aspects and domains of participation are addressed.

Data Sources: A systematic search was performed in PubMed.

Study Selection: Included were patient-reported instruments that primarily aim to measure participation.

Data Extraction: The full-text instruments were extracted from the articles or obtained from the authors. Two reviewers independently rated each item of the included instruments as measuring participation (yes, no, or undetermined). For each item, the specific aspect and domain of participation were categorized.

Data Synthesis: Included were 103 instruments (2445 items). Of the included items, 619 items concerned participation and 217 concerned undetermined items. In total, 68 instruments contained at least 1 (sub)scale with 50% or more participation or undetermined items. The participation items referred to the participation aspects: participation problems (53%), participation accomplishment (31%), and satisfaction with participation (9%). The domains of the participation items concerned: work/study (27%), social life (27%), general participation (19%), and home (11%). The undetermined items mainly referred to domains about leisure (43%), transport (26%), and shopping (12%).

Conclusions: According to our working definition of participation, most instruments that aim to measure participation do so only to a limited extent. These instruments mainly assess aspects of participation problems and participation accomplishment. The domains of participation covered by these instruments primarily include work/study, social life, general participation, home, leisure, transport, and shopping.