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. 2023 Sep;32(9):1401-1411.
doi: 10.1002/pon.6191. Epub 2023 Jul 11.

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

Mala M H Joosten  1 , Marloes van Gorp  1 , Jennifer van Dijk  1 , Leontien C M Kremer  1   2 , Eline van Dulmen-den Broeder  3 , Wim J E Tissing  1   4 , Jacqueline J Loonen  5 , Helena J H van der Pal  1 , Andrica C H de Vries  1   6 , Marry M van den Heuvel-Eibrink  1   6 , Cécile Ronckers  1   7 , Dorine Bresters  1   8 , Marloes Louwerens  8 , Sebastian J C C M Neggers  6 , Margriet van der Heiden-van der Loo  1 , Heleen Maurice-Stam  1 , Martha A Grootenhuis  1 ; Dutch LATER study group
Collaborators, Affiliations

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

Mala M H Joosten et al. Psychooncology. 2023 Sep.

Abstract

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: benefit and burden; health-related quality of life; pediatric oncology; post-traumatic stress; psycho-oncology; psychosocial outcomes; siblings; survivors of childhood cancer.

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