Characterizing participation measures developed with input from persons with acquired brain injury using the International Classification of Functioning, Disability and health

To characterize participation outcome measures developed with input from persons with acquired brain injury (ABI). We conducted a scoping review to identify participation outcome measures that were developed with input from individuals with ABI. We used the standardized International Classification of Functioning, Disability, and Health (ICF) linking rules to characterize the concepts, perspectives, and response options reflected in each measure. We identified five participation measurements that met our inclusion criteria. Across these measures, items primarily reflected ICF chapters d9 (community, social, or civic life), d8 (major life areas), and d7 (interpersonal interactions and relationships). Most items were characterized as descriptive, i.e. providing details about participation, or involved appraisal, indicating whether expectations were met. The concepts identified in these measures aligned with previous definitions of participation, however demonstrated some variability across measures, highlighting the multiple aspects of participation that may be reflected in measurement tools, and the need for standardized approaches to measure comparison. Acquired brain injury has lasting impacts on individuals and their ability to participate in meaningful roles and routines.Few participation measurements exist that include the involvement of individuals with acquired brain injury perspective during measurement development.Participation measurements developed with the involvement of individuals with acquired brain injury reflect the identified participation priorities of this population. Acquired brain injury has lasting impacts on individuals and their ability to participate in meaningful roles and routines. Few participation measurements exist that include the involvement of individuals with acquired brain injury perspective during measurement development. Participation measurements developed with the involvement of individuals with acquired brain injury reflect the identified participation priorities of this population.