Assessment of health‐related quality of life in children with cancer

Abstract

BACKGROUND.In pediatric settings, measures of health-related quality of life

Quality of life in children and adolescents surviving cancer

“…In keeping with other studies (Eiser et al, 1995;Sawyer et al, 1999;De Clercq et al, 2004;Russell et al, 2006;Upton et al, 2008), we found a strong correlation between the total QoL ILC scores reported by parents and by their adolescent child, suggesting that in the case of cancer, parents and adolescents share much of the same perspective. Moreover, our finding of lower QoL among children with brain tumours and late effects compared with controls were consistent for parent proxy report and adolescent self-report.…”

Agreement between pediatric brain tumor patients and parent proxy reports regarding the Pediatric Functional Assessment of Cancer Therapy–Childhood Brain Tumor Survivors questionnaire, version 2

“…This is consistent with previous studies showing that parents tend to overestimate their children's QOL in comparison with the children's reports, 7 particularly in terms of emotional functioning. 4 Our present finding may also reflect that children with BT and those who experience insults to the central nervous system as a result of cancer or cancer treatment are at significantly greater risk for adverse psychosocial outcomes. 23 As shown in Figure 1, we did observe differences in EWB scores between the on-and off-treatment groups in child patients, but not in parents.…”

“…As shown in Table 3, moderate-to-excellent parent-patient correlations were found for all pedsFACT-BrS subscales and total scores, and parents and patients reported mean levels of QOL similar to those seen in previous studies. 4,9,22 Higher correlations were seen between patient and parent reports in the child BT group versus the adolescent BT group. For example, the correlation consistencies between child BT patients and their parent proxies showed excellent agreement for the PWB, BT survivorspecific, and total pedsFACT-BrS scores (<0.80), good agreement for the SFWB scores (0.72), and moderate agreement for the EWB scores (0.59).…”

“…Second, we were only able to enroll 37 father-patient pairs. However, post hoc examination (as advised by Russell et al 4 ) revealed no significant difference in QOL outcomes or parent-child variations when maternal and paternal influences were considered. We found no difference between mothers and fathers on the subscales or overall Peds-FACT-BrS scores, with the exception that the fathers of child BT patients had lower BT survivor-specific and pedsFACT-BrS scores than the corresponding mothers.…”

“…Bhat and colleagues 9 examined the correlation between child and parent proxy reports in 134 BT patients (11 AE 5.4 years of age) evaluated by use of a general well-being assessment tool, the pediatric Quality of Life Inventory, and found that the children and their parents approached QOL assessment in a similar fashion. Russell and coworkers 4 studied 199 pediatric cancer patients and their parents, and found moderate parent-child correlations on the majority of the Child Health Questionnaire scales, as well as similar mean levels of QOL. Thus, the previous studies are inconsistent with regard to their findings on the agreement (or lack thereof) between patient and parent proxy reports when considering the QOL of pediatric cancer patients.…”