Participant-proxy agreement on objective and subjective aspects of societal participation following traumatic brain injury

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Study examined the level of agreement between participant (P) and significant other (SO) reports on societal participation in 3 objective domains (economic, community, and social activities) and subjective satisfaction with participation at 1 year after traumatic brain injury (TBI). The primary purpose of this study was to determine the circumstances under which a proxy’s response could substitute for a participant’s. Ninety-seven people with moderate to severe TBI and their SOs completed the Community Participation Indicators questionnaire, divided into objective (economic, community, social) and subjective (satisfaction) subscales. Results indicated that P-SO agreement differed by domain of participation, with economic and community indicators showing higher agreement than social and satisfaction items. Congruence was not affected by P-SO relationship or whether the pair lived together. However, pairs who spent at least daily time together had significantly higher agreement on satisfaction items than pairs who were together less often. Congruence was not predicted by SOs' self-reported degree of awareness of Ps' concerns. Severity of TBI, within the range represented in this sample, had no effect on P-SO congruence in any domain. The authors conclude that, in research on participation after TBI, proxy report may be an acceptable substitute for missing participant report on productivity and community activity outcomes. However, proxy responses should be used with caution for questions about social activities and degree of satisfaction with participation.

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