Objective The aim of this study was to examine the level of agreement between self- and proxy-reporting of health-related quality of life (HRQoL) in children (under 18 years of age) using generic preference-based measures. Methods A systematic review of primary studies that reported agreement statistics for self and proxy assessments of overall and/or dimension-level paediatric HRQoL using generic preference-based measures was conducted. Where available, data on intraclass correlation coefficients (ICCs) were extracted to summarise overall agreement levels, and Cohen’s kappa was used to describe agreement across domains. A meta-analysis was also performed to synthesise studies and estimate the level of agreement between self- and proxy-reported paediatric overall and domain-level HRQoL. Results Of the 30 studies included, 25 reported inter-rater agreement for overall utilities, while 17 reported domain-specific agreement. Seven generic preference-based measures were identified as having been applied: Health Utilities Index (HUI) Mark 2 and 3, EQ-5D measures, Child Health Utility 9 Dimensions (CHU9D), and the Quality of Well-Being (QWB) scale. A total of 45 dyad samples were included, with a total pooled sample of 3084 children and 3300 proxies. Most of the identified studies reported a poor inter-rater agreement for the overall HRQoL using ICCs. In contrast to more observable HRQoL domains relating to physical health and functioning, the inter-rater agreement was low for psychosocial-related domains, e.g., ‘emotion’ and ‘cognition’ attributes of both HUI2 and HUI3, and ‘feeling worried, sad, or unhappy’ and ‘having pain or discomfort’ domains of the EQ-5D. Parents demonstrated a higher level of agreement with children relative to health professionals. Child self- and proxy-reports of HRQoL showed lower agreement in cancer-related studies than in non-cancer-related studies. The overall ICC from the meta-analysis was estimated to be 0.49 (95% confidence interval 0.34–0.61) with poor inter-rater agreement. Conclusion This study provides evidence from a systematic review of studies reporting dyad assessments to demonstrate the discrepancies in inter-rater agreement between child and proxy reporting of overall and domain-level paediatric HRQoL using generic preference-based measures. Further research to drive the inclusion of children in self-reporting their own HRQoL wherever possible and limiting the reliance on proxy reporting of children’s HRQoL is warranted.

Context: Gastric emptying is a critical determinant of postprandial glycemic control in health and type 1 diabetes. There are few studies that assess the relationship between gastric emptying and postprandial glycaemia in adolescents with type 1 diabetes. Objective: The objectives of the study were to quantify gastric emptying in adolescents with type 1 diabetes and examine its relationship to postprandial glycaemia and autonomic function. Design: This was a case-control study. Gastric half-emptying time of a solid meal was measured by a 13C-octanoate breath test. Cardio-autonomic function was measured by heart rate variability. Chronic and postprandial gastrointestinal symptoms were evaluated by questionnaire and visual analog scales. Blood glucose concentrations were monitored frequently during the study. Setting: The study was conducted at a tertiary pediatric hospital in South Australia. Participants: Thirty adolescents (aged 15 ± 2.5 y) with type 1 diabetes and age- and sex-matched controls (gastric emptying, n = 20; heart rate variability, n = 135) participated in the study. Main Outcome: Gastric half-emptying time was the main outcome in the study. Results: Gastric emptying was more rapid in subjects with type 1 diabetes than controls [median half emptying time 78 (interquartile range 61–99) vs 109 (interquartile range 71–124) min, P = .02]. The postprandial rise in blood glucose at 60 minutes was strongly related to gastric half-emptying time (R = −0.65, P = .0001). Gastric emptying was slower in subjects with fasting hyperglycemia but was not related to heart rate variability. Nausea, bloating, and anxiety were related to fasting glycemia (P = .03). Conclusion: Rapid gastric emptying is a major determinant of postprandial glycemia in adolescents with type 1 diabetes. This observation has significant implications for therapy.

This study compares the empirical performance of a commonly used functional-status measure, the Barthel Index (BI), to that of a widely used generic preference-based instrument, the EuroQoL-5-Dimensions 3 Level (EQ-5D-3L), in older people. Data from older people receiving rehabilitation services were used to test the validity of the BI and EQ-5D-3L. Convergent validity was investigated using Spearman’s correlation, exploratory factor analysis (EFA), scatter plots, Krippendorff’s alpha and modified Bland-Altman plots. Discriminant validity was examined using Kruskal Wallis tests, ceiling effects and EFA. A total of 1690 participants were included in the analysis. The BI total and EQ-5D-3L utility scores showed moderate correlation (r = 0.51; Krippendorff’s alpha = 0.52). Kendall’s Tau-B correlations between BI items and EQ-5D-3L dimensions measuring the same construct were weak to moderate (0.05 ≤ absolute r ≤ 0.54). In the EFA, some BI items cross-loaded onto the same factors as EQ-5D-3L dimensions, suggesting that the instruments were interrelated. The BI, however, focuses more on physical functioning, while the EQ-5D-3L measures broader wellbeing concepts. Both instruments showed good discriminant validity and would therefore be equally valuable for measuring subgroup differences. Researchers should consider using the BI in rehabilitation to capture more physical functioning-specific constructs not measured by the EQ-5D-3L.