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

• Published in: Psycho-oncology (Chichester, England) Vol. 32; no. 9; pp. 1401 - 1411
• Main Authors: Joosten, Mala M H, van Gorp, Marloes, van Dijk, Jennifer, Kremer, Leontien C M, van Dulmen-den Broeder, Eline, Tissing, Wim J E, Loonen, Jacqueline J, van der Pal, Helena J H, de Vries, Andrica C H, van den Heuvel-Eibrink, Marry M, Ronckers, Cécile, Bresters, Dorine, Louwerens, Marloes, Neggers, Sebastian J C C M, van der Heiden-van der Loo, Margriet, Maurice-Stam, Heleen, Grootenhuis, Martha A
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.09.2023
• Subjects: Adult children; Adults; Anxiety; Cancer; Chi-square test; Childhood; Early childhood education; Health status; Medical diagnosis; Mental depression; Oncology; Pediatrics; Post traumatic stress disorder; Psychosocial factors; Psychosocial functioning; Quality of life; Questionnaires; Siblings; Sociodemographics; Survivor; siblings; pediatric oncology; benefit and burden; survivors of childhood cancer; health-related quality of life; post-traumatic stress; psychosocial outcomes; psycho-oncology
• ISSN: 1057-9249; 1099-1611
• DOI: 10.1002/pon.6191

To 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. Siblings 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. Five 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. On 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.