Background In 2019, the EuroQol Group developed a ‘beta’ 5-level version of EQ-5D-Y (Y-5L) by increasing the number of descriptive levels to five for each health dimension, as compared to the standard 3-level EQ-5D-Y (Y-3L). Objective To assess patient-caregiver agreement and test–retest reliability of the Y-5L and Y-3L in paediatric patients with haematological malignancies. Methods Paediatric inpatients aged 8–17 years were interviewed with the Y-5L and Y-3L questionnaires twice, while their caregivers were interviewed at the same time using the proxy versions of the questionnaires. Patient-caregiver agreement and test–retest reliability were assessed using Gwet’s agreement coefficient (Gwet’s AC1) for EQ-5D dimensions and the intraclass correlation coefficient (ICC) for the EQ VAS. Results Ninety-six patient-caregiver dyads participated in the study. Patient-caregiver agreement on the EQ-5D-Y descriptive system was moderate to good for both the Y-3L and Y-5L, but poor on the EQ VAS. Test–retest reliability of the descriptive system was good to very good for the Y-3L and moderate to good for the Y-5L in children, and fair to good for both versions of EQ-5D-Y in proxies. The EQ VAS showed good test–retest reliability in both children and caregivers. In a subgroup analysis of results in younger patients aged 8–10 years, patient-caregiver agreement and test–retest reliability were also observed to range from moderate to very good. Conclusion Both the Y-3L and Y-5L descriptive systems showed acceptable patient-caregiver agreement and test–retest reliability when used to assess the HRQoL of children and adolescents with haematological malignancies, including in younger patients.

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BackgroundThe study aimed to assess health-related quality of life (HRQoL) and to estimate the health utility of pediatric patients with hematological malignancies (HMs) in China.MethodA cross-sectional study recruited a series of pediatric inpatients diagnosed with HM from November 2018 to May 2019 in the Shanghai Children's Medical Center. Subjects were interviewed to collect sociodemographic information about themselves and their guardians. The EQ-5D-Y was completed by each patient to rate their own HRQoL, which later derived the health utility. The health status was also assessed by clinicians following the Eastern Cooperative Oncology Group (ECOG) system. Upon the descriptive analysis and univariate analysis, multivariate generalized linear models were built to explore the associations of risk factors with HRQoL measures of utility, Visual Analog Scale (VAS) score, and the five EQ-5D-Y domains.ResultsThe 96 subjects had a mean age of 10.5 years and included 62 (64.4%) boys. There were 46 (47.9%) and 25 (26.0%) children diagnosed with acute lymphoblastic leukemia and non-Hodgkin's lymphoma, respectively. The means (SD) of utility and EQ-VAS scores were 0.88 (0.10) and 85.8 (15.1), respectively. Twenty-six (27.1%) patients were graded poor health by the ECOG standard (score 2/3). Both univariate and multivariate analyses found strong correlations between ECOG and HRQoL. After adjusting for covariates, poor ECOG score was significantly associated with an impaired utility and VAS of −0.103 and −8.65, respectively. With regard to individual HRQoL domains, worse ECOG was more likely to report health problems with an increased risk of 2.94 to 12.50; residence, income, guardians' education, and disease duration were also found to be significantly related to either the utility or certain health domains.ConclusionThe HRQoL of Chinese pediatric patients with HM is considered relatively poor and of great concern to healthcare. With the strong correlations between EQ-5D-Y-related HRQoL measures and the traditional clinical index ECOG, the EQ-5D-Y is able to provide valuable evidence for clinical decision-making at the individual level. At the same time, its health utility can inform resource allocation at a macro level.