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

Abstract

Background: This study aims at determining the health-related quality of life (HRQOL) of children with acute lymphoblastic leukemia (ALL) after the induction therapy, assessing the agreement between child self-reports and family proxy-reports HRQOL, and determining the factors related to this agreement, especially child age, family attendance, and children's social relationships beyond the family. Methods: We analyzed questionnaire data (2012-2017) from the Japanese Pediatric Leukemia/Lymphoma Study Group's clinical study (ALL-B12). Participants were children with B-cell precursor ALL aged 5-18 and their family members, who mostly took care of the child during hospitalization. Participants answered the Pediatric Quality of Life Inventory™ (PedsQL™) 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 children, school age, and adolescents), 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 child self-reports and family proxy-reports; however, worry had the weakest agreement for all PedsQL subscales (ICC = .32, 95% confidence interval = .24-.40). The agreement of ICC-C was positively related to family attendance in the hospitalization, only for the young children group (B = .185, p = .003).

Sociodemographic and Medical Determinants of Quality of Life in Long-Term Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC CLG Studies

“…Although these former studies already highlighted some potential risk factors for altered QoL in childhood ALL patients, differences are encountered between self- and parent-reported QoL [ 12 , 27 ]. More specifically, parents could tend to report more problems in female and in older patients [ 2 , 6 , 16 , 28 ], or more mental symptoms in general than the survivors themselves [ 29 ].…”

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

“…Ad hoc follow-up interviews with parents revealed that they misunderstood the question, i.e., by "no problems" they meant "always/often," which is the inverse sense of meaning. However, other studies using PedsQL did not notice such disagreement between children and proxies [ 22 , 41 , 42 ].…”

“…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).…”

“…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 – 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.…”