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

Objectives: 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 (eg, 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 (ie, significantly lower than persons reported for themselves) for social [mean difference (MD) = 4.7, 95% confidence interval (CI): 1.8, 7.6], psychological (MD = 3.7, 95% CI: 0.6, 6.8), and physical (MD = 3.1, 95% CI: 0.6, 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 prioritized.