Community integration status 4 years after traumatic brain injury - Participant-proxy agreement

objectives: To measure the level of agreement on community integration outcomes 4 years after traumatic brain injury (TBI) in relation to injury severity, proxy-participant relationship, and type of question. Participants: Thirty-one survivors of TBI (14 with mild TBI and 17 with moderate-severe TBI) and 31 significant other proxies. Measures: General and leisure activity scales of the Katz Adjustment Scale (KAS). Results: Agreement was highest between proxies and participants with mild versus moderate-severe TBIs, between Spouse proxies and TBI participants compared to nonspouse proxies and on the more objective subscales (frequency of participation) compared to the expectation and satisfaction scales regardless of injury severity or proxy-participant relationship. Conclusions: For research purposes, proxy data are acceptable but clinicians should assess outcomes and set goals with input from both persons with TBIs and their proxies.