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

Author:

Joosten Mala M. H.1ORCID,van Gorp Marloes1ORCID,van Dijk Jennifer1,Kremer Leontien C. M.12,van Dulmen‐den Broeder Eline3,Tissing Wim J. E.14,Loonen Jacqueline J.5,van der Pal Helena J. H.1,de Vries Andrica C. H.16,van den Heuvel‐Eibrink Marry M.16,Ronckers Cécile17,Bresters Dorine18,Louwerens Marloes8,Neggers Sebastian J. C. C. M.6,van der Heiden‐van der Loo Margriet1,Maurice‐Stam Heleen1ORCID,Grootenhuis Martha A.1,

Affiliation:

1. Princess Máxima Center for Pediatric Oncology Utrecht The Netherlands

2. Department of Pediatrics Amsterdam UMC University of Amsterdam Amsterdam The Netherlands

3. Amsterdam UMC/location VUmc Amsterdam The Netherlands

4. Beatrix Children's Hospital/University of Groningen/University Medical Center Groningen Groningen The Netherlands

5. Radboudumc Center of Expertise for Cancer Survivorship Department of Hematology Radboud University Medical Center Nijmegen The Netherlands

6. Erasmus MC Sophia Children's Hospital/Erasmus Medical Center Rotterdam The Netherlands

7. Department of Health Services Research Carl v Ossietzky University of Oldenburg Oldenburg Germany

8. Leiden University Medical Center Leiden The Netherlands

Abstract

AbstractObjectiveTo 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.

Funder

Stichting Kinderen Kankervrij

Publisher

Wiley

Subject

Psychiatry and Mental health,Oncology,Experimental and Cognitive Psychology

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