The use of proxies in community integration research

Objective: To assess the level of agreement between persons with various disabilities and their proxies in reporting community integration outcomes using the Craig Handicap Assessment and Reporting Technique (CHART). Design: Reliability study. Setting: Participants living in the community for a minimum of 6 months after onset of disability or completion of inpatient rehabilitation. Participants: Persons (n = 983) with disability resulting from amputation, burn, multiple sclerosis, spinal cord injury (SCI), stroke, or traumatic brain injury and their self-selected proxies. Interventions: Telephone inter-view of subjects (FIM(TM) instrument, CHART); proxies (CHART). FIM instrument assesses the degree of assistance with physical and cognitive subscales; CHART measures community integration in 6 subscales: physical, cognitive, and economic independence, and mobility, social integration. and occupation. Main Outcome Measures: Intraclass correlation coefficients (ICCs) were used to assess participant-proxy agreement, and stepwise multiple regressions were used to identify patterns of difference in agreement based on disability type and demographic variables. Results: Thirty-seven of the 38 items examined for the entire sample yielded moderate to strong ICCs. Multiple regression analyses indicated that proxies overrated participants gr with severe functional cognitive disabilities on the mobility subscale (p <.001), overrated participants with less than a high school education on the total CHART score (p <.01), and underrated participants with SCIs on the occupation subscale (p <.01). Differences in all cases, however, were less than 6 points out of a possible score of 100 per subscale. Conclusions: Participant-proxy agreement across the 6 disability groups provided evidence in support of the inclusion of proxy data for persons with various types of disabilities in community integration research.