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

Abstract

ObjectiveResearch 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 SettingA 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). ResultsThe 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. ConclusionsProxies (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.