Quality of life assessments in nursing homes revealed a tendency of proxies to moderate patients' self-reports.

OBJECTIVE

Research into different patient populations suggests that, on average, proxies report poorer health-related quality of life (HRQoL) compared to self-reports. We aimed to investigate whether the difference between proxy reports and self-reports (interrater gap) varies across the whole range of self-reports from low to high HRQoL scores.

STUDY DESIGN AND SETTING

A cross-sectional study in 16 Dutch nursing home (NH) dementia special care (DSC) units (n = 256) and 17 somatic units (n = 326). Professional carers, blinded to self-reports, provided EuroQol-5D scores from two perspectives: their own perspective (proxy-proxy) of the patients' HRQoL and the estimation of the patient's view (proxy-patient).

RESULTS

The interrater gap varied linearly in both DSC and somatic patients from proxy scores overestimating low self-reports to proxy scores underestimating high self-reports. This attenuation tendency existed for both proxy-proxy and proxy-patient perspectives. The interrater gap tended to be smaller for the proxy-patient perspective.

CONCLUSIONS

Proxies (professional carers) tend to attenuate self-reports in NH patients with and without dementia toward moderate scores rather than report systematically poorer HRQoL. A proxy-patient perspective may be preferable to a proxy-proxy perspective for the purpose of estimating self-reports. Further research into other populations is needed to understand whether the attenuation tendency is a general phenomenon.