Fiona Schulte1,2, Amanda Wurz3, Kathleen Reynolds4,5, Douglas Strother1,2, Deborah Dewey6,7. 1. Division of Hematology Oncology Bone Marrow Transplantation, Alberta Children's Hospital, Calgary, Alberta, Canada. 2. Department of Oncology and Paediatrics, University of Calgary, Alberta, Canada. 3. School of Human Kinetics, University of Ottawa, Ottawa, Ontario, Canada. 4. Long Term Survivor Clinic, Alberta Children's Hospital, Calgary, Alberta, Canada. 5. Department of Family Medicine, University of Calgary, Calgary, Alberta, Canada. 6. Departments of Pediatrics & Community Health Sciences, University of Calgary, Alberta, Canada. 7. Behavioural Research Unit, Calgary, Alberta, Canada.
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.
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.
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