Family and professionals underestimate quality of life across diverse cultures and health conditions: Systematic review

Objective To examine how accurately proxies evaluate quality of life (QoL) in people they know, using cross-cultural data from the multidimensional, multilingual World Health Organization Quality of Life assessment short-form – The WHOQOL-BREF, and whether accuracy varies by health condition or proxy type (e.g. family/professional). Study design and setting Systematic review with meta-analysis: We searched five databases for reports of proxy-completed WHOQOL-BREF scores and aggregated results using a random-effects model. Minimal clinically important difference values were calculated. Results Analyses included nine studies (1980 dyads) of physical (n=762) or mental (n=604) health conditions, or intellectual disability (n=614), in 10 countries. Mean person-proxy correlations ranged from 0.28 (social QoL) to 0.44 (physical QoL). Proxy measures were underestimates (i.e. significantly lower than persons reported for themselves) for social (mean difference (MD) = 4.7, 95% confidence interval (CI) 1.8 to 7.6), psychological (MD=3.7, 95% CI 0.6 to 6.8), and physical (MD=3.1, 95% CI 0.6 to 5.6) QoL. Underestimates varied significantly between health conditions for social (p<0.001), psychological (p=0.009) and physical (p=0.02) QoL. Family members assessed psychological and environmental QoL better than professionals. Conclusion Proxies tend to be imprecise, underestimating QoL, and should be aware of this tendency. Where health care is decided for others, family members’ views about QoL should be prioritised.