Proxy reliability: Health-related quality of life (HRQoL) measures for people with disability

摘要: Objectives: Research and surveillance activities sometimes require that proxy respondents provide key exposure or outcome information, especially for studies of people with disability (PWD). In this study, we compared the health-related quality life (HRQoL) responses index PWD to proxies. Methods: Subjects were selected from nursing home, other assisted living residences, several clinic samples PWD. Each identified one more respondents. Computer-assisted interviews used a random order measures. Proxy reliability was measured by intraclass correlation (ICC) κ statistics. HRQoL measures tested included questions Behavioral Risk Factor Surveillance System (BRFSS), basic instrumental daily (ADLs IADLs), medical outcomes study short-form 36 12 (SF-36 SF-12). Results: A total 131 index-proxy sets completed. general, agreement tended be best relatives, friends lower, health care proxies lowest. For example, ICC physical functioning scale SF-36 0.68 0.51 friends, 0.40 healthcare There tendency overestimate impairment underestimate HRQoL. This pattern reversed pain, which consistently underestimated. The among instruments, types, domains complex, individual vary these general results. Conclusions: We suggest caution when using HRQoL, those measuring subjective domains.