title: Quality of Life in Survivors of Pediatric Cancer and Their Siblings: The Consensus Between Parent-Proxy and Self-Reports.
abstract: OBJECTIVE
  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.
authors.affiliation: Division of Hematology Oncology Bone Marrow Transplantation, Alberta Children's Hospital, Calgary, Alberta, Canada.|Department of Oncology and Paediatrics, University of Calgary, Alberta, Canada.
authors.forename: Fiona
authors.initials: F
authors.lastname: Schulte
authors.affiliation: School of Human Kinetics, University of Ottawa, Ottawa, Ontario, Canada.
authors.forename: Amanda
authors.initials: A
authors.lastname: Wurz
authors.affiliation: Long Term Survivor Clinic, Alberta Children's Hospital, Calgary, Alberta, Canada.|Department of Family Medicine, University of Calgary, Calgary, Alberta, Canada.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Reynolds
authors.affiliation: Division of Hematology Oncology Bone Marrow Transplantation, Alberta Children's Hospital, Calgary, Alberta, Canada.|Department of Oncology and Paediatrics, University of Calgary, Alberta, Canada.
authors.forename: Douglas
authors.initials: D
authors.lastname: Strother
authors.affiliation: Departments of Pediatrics & Community Health Sciences, University of Calgary, Alberta, Canada.|Behavioural Research Unit, Calgary, Alberta, Canada.
authors.forename: Deborah
authors.initials: D
authors.lastname: Dewey
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D032921:Consensus; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D010290:Parents; D019727:Proxy; D011788:Quality of Life; D057566:Self Report; D035781:Siblings / Q000523:psychology; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*
keywords: late effects of cancer treatment; pediatric oncology; psychosocial; quality of life