TY - JOUR
T1 - Psychosocial functioning of adult siblings of Dutch very long-term survivors of childhood cancer
T2 - DCCSS-LATER 2 psycho-oncology study
AU - Joosten, Mala M.H.
AU - van Gorp, Marloes
AU - van Dijk, Jennifer
AU - Kremer, Leontien C.M.
AU - van Dulmen-den Broeder, Eline
AU - Tissing, Wim J.E.
AU - Loonen, Jacqueline J.
AU - van der Pal, Helena J.H.
AU - de Vries, Andrica C.H.
AU - van den Heuvel-Eibrink, Marry M.
AU - Ronckers, Cécile
AU - Bresters, Dorine
AU - Louwerens, Marloes
AU - Neggers, Sebastian J.C.C.M.
AU - van der Heiden-van der Loo, Margriet
AU - Maurice-Stam, Heleen
AU - Grootenhuis, Martha A.
AU - Versluys, Birgitta
AU - van Leeuwen, Flora
AU - van der Steeg, Lideke
AU - Janssens, Geert
AU - van Santen, Hanneke
AU - Veening, Margreet
AU - den Hartogh, Jaap
AU - Pluijm, Saskia
AU - Batenburg, Lilian
AU - de Ridder, Hanneke
AU - Hollema, Nynke
AU - Teunissen, Lennart
AU - Schellekens, Anke
N1 - Funding Information:
We thank the other members of the Dutch LATER study group (Birgitta Versluys, Flora van Leeuwen, Lideke van der Steeg, Geert Janssens, Hanneke van Santen, Margreet Veening, Jaap den Hartogh, Saskia Pluijm, Lilian Batenburg, Hanneke de Ridder, Nynke Hollema, Lennart Teunissen, Anke Schellekens) and all physicians, research nurses, data managers and participating siblings for their contribution. We further thank prof. Ad Vingerhoets for providing the HADS reference group. Funding for this study was provided by Stichting Kinderen Kankervrij (KIKA, Children Cancer‐free Foundation in English).
Funding Information:
We thank the other members of the Dutch LATER study group (Birgitta Versluys, Flora van Leeuwen, Lideke van der Steeg, Geert Janssens, Hanneke van Santen, Margreet Veening, Jaap den Hartogh, Saskia Pluijm, Lilian Batenburg, Hanneke de Ridder, Nynke Hollema, Lennart Teunissen, Anke Schellekens) and all physicians, research nurses, data managers and participating siblings for their contribution. We further thank prof. Ad Vingerhoets for providing the HADS reference group. Funding for this study was provided by Stichting Kinderen Kankervrij (KIKA, Children Cancer-free Foundation in English).
Publisher Copyright:
© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.
PY - 2023/9
Y1 - 2023/9
N2 - 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.
AB - 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.
KW - benefit and burden
KW - health-related quality of life
KW - pediatric oncology
KW - post-traumatic stress
KW - psycho-oncology
KW - psychosocial outcomes
KW - siblings
KW - survivors of childhood cancer
UR - http://www.scopus.com/inward/record.url?scp=85164967881&partnerID=8YFLogxK
U2 - 10.1002/pon.6191
DO - 10.1002/pon.6191
M3 - Article
C2 - 37434295
AN - SCOPUS:85164967881
SN - 1057-9249
VL - 32
SP - 1401
EP - 1411
JO - Psycho-Oncology
JF - Psycho-Oncology
IS - 9
ER -