A comparison of self-reported and proxy-reported health utilities in children: a systematic review and meta-analysis

Abstract

Objective This study aimed to conduct a systematic review and meta-analysis to compare differences in health utilities (HUs) assessed by self and proxy respondents in children, as well as to evaluate the effects of health conditions, valuation methods, and proxy types on the differences. Methods Eligible studies published in PubMed, Embase, Web of Science, and Cochrane Library up to December 2019 were identified according to PRISMA guidelines. Meta-analyses were performed to calculate the weighted mean differences (WMDs) in HUs between proxy- versus self-reports. Mixed-effects meta-regressions were applied to explore differences in WMDs among each health condition, valuation method and proxy type. Results A total of 30 studies were finally included, comprising 211 pairs of HUs assessed by 15,294 children and 16,103 proxies. This study identified 34 health conditions, 10 valuation methods, and 3 proxy types. In general, proxy-reported HUs were significantly different from those assessed by children themselves, while the direction and magnitude of these differences were inconsistent regarding health conditions, valuation methods, and proxy types. Meta-regression demonstrated that WMDs were significantly different in patients with ear diseases relative to the general population; in those measured by EQ-5D, Health utility index 2 (HUI2), and Pediatric asthma health outcome measure relative to Visual analogue scale method; while were not significantly different in individuals adopting clinician-proxy and caregiver-proxy relative to parent-proxy. Conclusion Divergence existed in HUs between self and proxy-reports. Our findings highlight the importance of selecting appropriate self and/or proxy-reported HUs in health-related quality of life measurement and economic evaluations.

Measuring health-related quality of life measures in children: lessons from a pilot study

“…For example, individuals who have learning disabilities or child populations may experience challenges in understanding the language within questionnaires and might not be able to complete them. Inaccurate or incomplete completion is likely to produce biased measurement of HRQoL and jeopardise their use in related studies (Jiang et al ., 2021 ). In the context of children and adolescents, there are several commonly used generic instruments that have either been adapted from adult questionnaires or developed especially for their application in child populations (Jiang et al ., 2021 ; Di Biase et al ., 2021 ).…”

“…Inaccurate or incomplete completion is likely to produce biased measurement of HRQoL and jeopardise their use in related studies (Jiang et al ., 2021 ). In the context of children and adolescents, there are several commonly used generic instruments that have either been adapted from adult questionnaires or developed especially for their application in child populations (Jiang et al ., 2021 ; Di Biase et al ., 2021 ). The EQ-5D questionnaire is considered suitable for children aged 12 years, however for children younger than this age, the child-friendly version of EQ-5D-Youth version (EQ- 5D-Y) is often used instead.…”

“…In these circumstances, proxy-reporting is considered the practical option. This is when parents or caregivers rate the child’s health state based on their behaviour, usually in the presence of an interview guide and as a child-primary carer dyad (Jiang et al ., 2021 ). Proxy-reporting is commonly used in generating HRQoL for cost-effectiveness studies (Otero et al ., 2013 ) and is not limited to quality of life outcomes (Mack et al ., 2020 ).…”

“…Evidence shows discrepancies between HRQoL when reported by parents or reported by children (Jiang et al ., 2021 ; Khadka et al ., 2019 ). A systematic review and meta-analysis comparing self-reported and proxy-reported health utilities found significant differences between proxy respondents and children aged between 3 and 18 years (Jiang et al ., 2021 ). The directions and magnitudes of these differences were inconsistent across different health conditions and valuation methods.…”

“…In a very recent systematic review, Jiang et al . ( 2021 ) identified only 2 out of 30 studies where comparisons of reporting between children and proxies concerned mental health conditions. Second, the age range of children in the current study is young and is younger than in most studies comparing reports by children and proxies; most studies included in Jiang et al .…”