Participation instruments in persons with spinal cord injury: A narrative review

Background: Spinal cord injury (SCI) has serious impacts on the patient’s function. Therefore, their participation is important as one of the major indicators of the quality of life. This study reviews instruments that evaluate participation among people with spinal cord injury. Methods: Four electronic databases (WebofScience, Scopus, MEDLINE/PubMed, SID) were searched for studies published in the English language between 2000 and 2019 in one or more peer-reviewed journals on the measurement properties (reliability, validity and/or responsiveness) in all populations including adults with SCI. Instruments assessed based on special criteria designed for disability outcome measures. Results: Six instruments were included: Incontinence - Activity Participation Scale, Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), World Health Organization's disability assessment tool-II (WHODAS-II), ICF Measure of Participation and ACTivities Screener (IMPACT-S), Impact on Participation and Autonomy (IPA) , Participation measure for Post-Acute care (PM-PAC). Evidence related to the reliability and validity was reported for all of the instruments. Only WHODAS-II, USER-P, and IMPACT were compared with each other in recent publications. Responsiveness was not obtained for any of the instruments. Conclusion: As the underlying structure of every instrument is different, the concept of the evaluated participation varies between instruments. The proper instrument for examining participation of the patients with SCI should be selected based on a thorough analysis of the individual's condition and context. Innovative models of disability should be the basis of emerging instruments for evaluation of participation, as well as empirical studies and modern measurement technologies that fill the gap between the perceived participation of the individual and the research's record.