Quality of Life in Survivors of Pediatric Cancer and Their Siblings: The Consensus Between Parent-Proxy and Self-Reports

Pediatr Blood Cancer. 2016 Apr;63(4):677-83. doi: 10.1002/pbc.25868. Epub 2016 Jan 6.

Abstract

Objectives: To examine the discrepancy between survivor-parent and sibling-parent reports of health-related quality of life (HRQL) and the level of agreement (i.e., correlation) between child reports (i.e., survivor and sibling) and parent-proxy reports of HRQL.

Methods: Fifty-one families participated. Pediatric cancer survivors (49% male; 6-18 years of age) and one sibling (47% male; 9-18 years of age) completed a measure of their HRQL. As well, one parent (14% male; 27-65 years of age) from each family completed a proxy report of their children's (i.e., survivor and sibling) HRQL. Consensus was determined through discrepancy and agreement scores, between parent-proxy and children's (i.e., survivors and siblings) self-reports of total HRQL, and physical, emotional, social, and school functioning subscales.

Results: Repeated-measures analysis of variance (ANOVA) revealed significant group differences for total HRQL (F = 6.79, P ≤ 0.01). Repeated-measure ANOVAs of subscale discrepancy scores revealed significant group differences for physical functioning scores (F = 6.39, P < 0.01). A significant interaction was also found for social functioning when age at diagnosis was considered as a covariate (F = 10.30, P < 0.01). Zero-order and intraclass correlation coefficients revealed different levels of agreement between parent and child reports. Specifically, there was poorer agreement between parent-proxy and sibling's self-reports, particularly on social and emotional subscales.

Conclusions: Discrepancy and agreement are both important indices to consider when examining consensus between parent-proxy and child self-reports. The findings from this study have important implications for future research and suggest that the impact of cancer on siblings should be further investigated.

Keywords: late effects of cancer treatment; pediatric oncology; psychosocial; quality of life.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Child
  • Consensus
  • Female
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / psychology*
  • Parents*
  • Proxy
  • Quality of Life*
  • Self Report*
  • Siblings / psychology
  • Surveys and Questionnaires
  • Survivors / psychology*