Emotional and behavioral problems of pediatric cancer survivors and their siblings: Concordance of child self-report and parent proxy-report

Abstract

Objective: Childhood cancer confronts families with major challenges. The study aimed at developing an empirical and multi-perspective understanding of emotional and behavioral problems of cancer survivors diagnosed with leukemia and brain tumors and their siblings. Further, the concordance between child self-report and parent proxy-report was examined. Methods: 140 children (72 survivors, 68 siblings) and 309 parents were included in the analysis (respond rate: 34%). Patients, diagnosed with leukemia or brain tumors, and their families were surveyed on average 7.2 months after the end of intensive therapy. Outcomes were assessed using the German SDQ. Results were compared with normative samples. Data were analyzed descriptively, and group differences between survivors, siblings, and a norm sample were determined using one-factor ANOVA followed by pairwise comparisons. The concordance between the parents and children was determined by calculating Cohen's kappa coefficient. Results: No differences in the self-report of survivors and their siblings were identified. Both groups reported significantly more emotional problems and more prosocial behavior than the normative sample. Although the interrater reliability between parents and children was mostly significant, low concordances were found for emotional problems, prosocial behavior (survivor/parents), and peer relationship problems (siblings/parents). Conclusion: The findings point out the importance of psychosocial services in regular aftercare. These should not only focus on survivors, but additionally address the siblings' needs. The low concordance between the parents' and the children's perspectives on emotional problems, prosocial behavior, and peer relationship problems suggests the inclusion of both perspectives to allow needs-based support.