Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

PURPOSE: Serial assessment of health condition based on self-report made by children and their proxies has consistently shown a lack of congruence. The study explored the discrepancies between mother’s, father’s, and children’s reports on health-related quality of life (HRQOL) during the first two months of pediatric cancer treatment. METHODS: In this cohort study, children and parents completed the generic and cancer-specific Pediatric Quality-of-Life Inventory (PedsQL) questionnaires at initial diagnosis and in the subsequent months. Evaluation of discrepancies included intraclass correlations between mother–child and father–child dyads at different domain levels. RESULTS: Thirty-six children with a diagnosis of cancer between May 2020 and November 2021 and their parents were included in this study. At diagnosis, mother–child dyads showed better agreement on more domains of the PedsQL Generic Core Scale than father–child dyads; moderate agreement persisted for both parents at subsequent time points on the physical domain. The disease-specific PedsQL Cancer Module revealed moderate and better agreement for mother–child dyads during active cancer therapy. In particular, agreement of mother–child dyads was pronounced for domains such as worry (0.77 [95% CI 0.52–0.89, P < 0.001]), whereas fathers tended to overestimate the child’s symptom burden for most of the remaining domains of the PedsQL Cancer Module. CONCLUSION: This cohort study shows that both parent proxy reports can provide valid information on child’s HRQOL, but that fathers tend to overestimate, particularly for non-observable domains. Proxy reports derived from mothers more closely agreed with children’s HRQOL and might be more weighted, if there is uncertainty between parents. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-023-03341-0.