Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy

Abstract Purposes: To determine the health-related quality of life (HRQOL) of children with acute lymphoblastic leukemia (ALL) during induction therapy, clarify the agreement between child self-reported and family proxy-reported HRQOL, and examine the related factors of HRQOL, especially child age, family attendance, and children’s social relationships outside of the family. Methods: We analyzed questionnaire data (2012–2017) from the Japanese Pediatric Leukemia/Lymphoma Study Group’s ALL-B12. Participants were children with B-cell Precursor ALL aged 5–18 and their families. Participants answered the Pediatric Quality of Life Inventory TM (PedsQL TM ) Generic Core Scales (PedsQL-G) and Cancer Module (PedsQL-C) to measure pediatric HRQOL. We calculated the differences between child self-reported and family proxy-reported subscale scores along with intraclass correlation coefficients (ICC). We conducted multiple regression analyses according to all participant pairs and age groups (young child, school age and adolescent), with ICCs for all PedsQL-G subscales (ICC-G) and all PedsQL-C subscales (ICC-C) as the outcome variables. Results: Five hundred twenty-two pairs of children and their families were analyzed. We observed a moderate level of agreement on most PedsQL subscales between the child self-reports and family proxy-reports; however, worry had the weakest agreement for all PedsQL subscales (ICC = .32). The agreement of ICC-C was positively related to family attendance for the young child group ( B = .185, p = .003). Conclusion: We observed some differences between child self-reports and family proxy-reports of HRQOL of children with ALL, suggesting that both parties should be administered HRQOL measurements during treatment.