Psychosocial functioning of adult siblings of Dutch very long‐term survivors of childhood cancer: DCCSS‐LATER 2 psycho‐oncology study

Abstract

ObjectiveTo describe psychosocial outcomes among adult siblings of very long‐term childhood cancer survivors (CCS), to compare these outcomes to reference populations and to identify factors associated with siblings' psychosocial outcomes.MethodsSiblings of survivors (diagnosed <18 years old, between 1963 and 2001, >5 years since diagnosis) of the Dutch Childhood Cancer Survivor Study DCCSS‐LATER cohort were invited to complete questionnaires on HRQoL (TNO‐AZL Questionnaire for Adult's HRQoL), anxiety/depression (Hospital Anxiety and Depression Scale), post‐traumatic stress (Self‐Rating Scale for Post‐traumatic Stress Disorder), self‐esteem (Rosenberg Self‐Esteem Scale) and benefit and burden (Benefit and Burden Scale for Children). Outcomes were compared to a reference group if available, using Mann‐Whitney U and chi‐Square tests. Associations of siblings' sociodemographic and CCS’ cancer‐related characteristics with the outcomes were assessed with mixed model analysis.ResultsFive hundred five siblings (response rate 34%, 64% female, mean age 37.5, mean time since diagnosis 29.5) of 412 CCS participated. Siblings had comparable HRQoL, anxiety and self‐esteem to references with no or small differences (r = 0.08−0.15, p < 0.05) and less depression. Proportions of symptomatic PTSD were very small (0.4%−0.6%). Effect sizes of associations of siblings' sociodemographic and CCS cancer‐related characteristics were mostly small to medium (β = 0.19−0.67, p < 0.05) and no clear trend was found in the studied associated factors for worse outcomes.ConclusionsOn the very long‐term, siblings do not have impaired psychosocial functioning compared to references. Cancer‐related factors seem not to impact siblings' psychosocial functioning. Early support and education remain essential to prevent long‐term consequences.

“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

“…Finally, the illness trajectory of children with LT/LL may be long lasting, and siblings need support not only during the initial phase but also throughout the entire course of illness, which could last for many years. Despite a recent study indicating that adult siblings of long‐term survivors of childhood cancer have no impairment in psychosocial functioning compared to references (Joosten et al, 2023 ), adult siblings of children with other LT/LL conditions, such as genetic and neurological with no curative treatment options may perceive lasting impacts on the family due to the ill child’s condition. As shown in our study, the impact of living with a child with a LT/LL condition may last over generations when parents are unavailable not only for the sibling but also grandchildren.…”