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) andCancer 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.

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

“…Thus, there is a strong recommendation that children with cancer should be the primary reporters of their symptoms and if they are unable to provide self-reports caregiver proxy reports should be used [12]. In addition, an overall lack of fathers as caregiver proxy reporters is noted, and only a limited number of research studies have included both parents but did not separately investigate their perspectives on child's HRQOL during active cancer therapy [12,20,22,23]. One recently published study compared 120 paternal and maternal proxy reports concerning agreement on child HRQOL, but the vast majority of children with cancer were post-treatment (mean time since diagnosis 3.3 (± 1.4) years and 87% of the patients had completed therapy).…”

“…Thus, caregiver proxy reports are often used as an alternative to the child's selfreport, particularly but not only when the child is unable to provide a self-report. The congruence between caregiver reports and child self-reports is influenced by several factors such as diagnosis, age, gender, socioeconomic status, or parent's own HRQOL [20][21][22][23] with the consequence that disagreement on health and well-being might result in medical mismanagement [24]. In addition, parents consistently tend to overestimate symptom burden and functional limitations compared to children's self-report [20,22,23,25,26].…”

“…The congruence between caregiver reports and child self-reports is influenced by several factors such as diagnosis, age, gender, socioeconomic status, or parent's own HRQOL [20][21][22][23] with the consequence that disagreement on health and well-being might result in medical mismanagement [24]. In addition, parents consistently tend to overestimate symptom burden and functional limitations compared to children's self-report [20,22,23,25,26]. Since an overall lack of fathers' reports is noted [12], most of the studies compared caregiver-child dyads and there are little data regarding the difference between mothers' and fathers' perspective on child's HRQOL.…”

Acute myeloid leukemia secondary to acute B lymphoblastic leukemia treated with maintenance therapy in a child: A case report

“…With multi-agent induction, consolidation, and maintenance chemotherapy, children with ALL enjoy a reasonably good survival. [1][2][3][4] However there are reports of sAML attributable to cytotoxic treatment protocol. 5,6 sAML usually occurs with a latency period after the treatment of primary malignancies.…”

“…Among the existing childhood hematologic cancers, acute lymphoblastic leukemia (ALL) has the highest incidence. With multi‐agent induction, consolidation, and maintenance chemotherapy, children with ALL enjoy a reasonably good survival 1–4 . However there are reports of sAML attributable to cytotoxic treatment protocol 5,6 .…”