Characterizing Participation Measures With Stakeholder Input Using the International Classification of Functioning, Disability, and Health

Objective(s): To characterize the concepts, perspectives, and response options of participation outcome measures conceptualized with input from individuals with acquired brain injury (ABI).

Data Sources: PubMed, Shirley Ryan Ability Lab-Rehab Measures Database, NINDS Common Data Elements

Study Selection: Measures were eligible for inclusion if they were 1) conceptualized with input from individuals with ABI, 2) developed after 2000, 3) available in English, 4) included >1 participation domain.

Data Extraction: Two researchers evaluated measures for inclusion. Concepts were linked to the International Classification of Functioning, Disability, and Health (ICF) using the established linking rules.

Data Synthesis: Researchers identified 5 participation measures that met the inclusion criteria. The “main concepts” of each measure were primarily linked to d9 Community, social or civic life (31.4%), d8 Major life areas (17.9%), and d7 Interpersonal interactions and relationships (14.7%). The majority of “other concepts” were linked to d6 Domestic life (31.7%). Overall, “main concepts” combined with “other concepts” were primarily linked to d9 Community, social, or civic life (25.9%), d7 Interpersonal interactions and relationships (16.2%), and d8 Major life areas (13.9%). The perspective of items consisted of performance (40.6%), need/dependency (27.3%), appraisal (23.1%), and capacity (9.1%). Response options included confirmation/agreement (37.1%), intensity (32.2%), and frequency (30.8%).

Conclusions: Findings for “main concepts” were consistent with previous ICF-based characterizations of participation measures. Despite the reported importance of qualitative attributes of participation to individuals with ABI, most items reflected quantification of performance or need/dependency, with less focus on appraisal. Utilizing participation outcome measures developed with input from individuals with ABI may reflect some aspects of participation that are important to individuals with ABI but future measures should consider greater inclusion of the appraisal perspective to contribute to client-centered treatment approaches and measurable goals.

Author(s) Disclosures: N/A