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

Mala M.H. Joosten; Marloes van Gorp; the Dutch LATER Study group; Jennifer van Dijk; Leontien C.M. Kremer; Eline van Dulmen-den Broeder; Wim J.E. Tissing; Jacqueline J. Loonen; Helena J.H. van der Pal; Andrica C.H. de Vries; Marry M. van den Heuvel-Eibrink; Cécile Ronckers; Dorine Bresters; Marloes Louwerens; Sebastian J.C.C.M. Neggers; Margriet van der Heiden-van der Loo; Heleen Maurice-Stam; Martha A. Grootenhuis; 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

doi:10.1002/pon.6191

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

Mala M.H. Joosten, Marloes van Gorp, the Dutch LATER Study group, Jennifer van Dijk, Leontien C.M. Kremer, Eline van Dulmen-den Broeder, Wim J.E. Tissing, Jacqueline J. Loonen, Helena J.H. van der Pal, Andrica C.H. de Vries, Marry M. van den Heuvel-Eibrink, Cécile Ronckers, Dorine Bresters, Marloes Louwerens, Sebastian J.C.C.M. Neggers, Margriet van der Heiden-van der Loo, Heleen Maurice-Stam, Martha A. Grootenhuis^*, Birgitta Versluys, Flora van LeeuwenLideke 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

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Pages (from-to)	1401-1411
Number of pages	11
Journal	Psycho-Oncology
Volume	32
Issue number	9
Early online date	2023
DOIs	https://doi.org/10.1002/pon.6191
Publication status	Published - Sept 2023

Bibliographical note

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.

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Cite this

Joosten, M. M. H., van Gorp, M., the Dutch LATER Study group, van Dijk, J., Kremer, L. C. M., van Dulmen-den Broeder, E., Tissing, W. J. E., Loonen, J. J., van der Pal, H. J. H., de Vries, A. C. H., van den Heuvel-Eibrink, M. M., Ronckers, C., Bresters, D., Louwerens, M., Neggers, S. J. C. C. M., van der Heiden-van der Loo, M., Maurice-Stam, H., Grootenhuis, M. A., Versluys, B., ... Schellekens, A. (2023). Psychosocial functioning of adult siblings of Dutch very long-term survivors of childhood cancer: DCCSS-LATER 2 psycho-oncology study. Psycho-Oncology, 32(9), 1401-1411. https://doi.org/10.1002/pon.6191

@article{4f089e418be74521b6d79f78ff1a4d36,

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

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{\textquoteright} 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.",

author = "Joosten, {Mala M.H.} and {van Gorp}, Marloes and {the Dutch LATER Study group} and {van Dijk}, Jennifer and Kremer, {Leontien C.M.} and {van Dulmen-den Broeder}, Eline and Tissing, {Wim J.E.} and Loonen, {Jacqueline J.} and {van der Pal}, {Helena J.H.} and {de Vries}, {Andrica C.H.} and {van den Heuvel-Eibrink}, {Marry M.} and C{\'e}cile Ronckers and Dorine Bresters and Marloes Louwerens and Neggers, {Sebastian J.C.C.M.} and {van der Heiden-van der Loo}, Margriet and Heleen Maurice-Stam and Grootenhuis, {Martha A.} and Birgitta Versluys and {van Leeuwen}, Flora and {van der Steeg}, Lideke and Geert Janssens and {van Santen}, Hanneke and Margreet Veening and {den Hartogh}, Jaap and Saskia Pluijm and Lilian Batenburg and {de Ridder}, Hanneke and Nynke Hollema and Lennart Teunissen and Anke Schellekens",

note = "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: {\textcopyright} 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.",

year = "2023",

month = sep,

doi = "10.1002/pon.6191",

language = "English",

volume = "32",

pages = "1401--1411",

journal = "Psycho-Oncology",

issn = "1057-9249",

publisher = "John Wiley & Sons Ltd.",

number = "9",

}

Joosten, MMH, van Gorp, M, the Dutch LATER Study group, van Dijk, J, Kremer, LCM, van Dulmen-den Broeder, E, Tissing, WJE, Loonen, JJ, van der Pal, HJH, de Vries, ACH , van den Heuvel-Eibrink, MM, Ronckers, C, Bresters, D, Louwerens, M, Neggers, SJCCM, van der Heiden-van der Loo, M, Maurice-Stam, H, Grootenhuis, MA, Versluys, B, van Leeuwen, F, van der Steeg, L, Janssens, G, van Santen, H, Veening, M, den Hartogh, J, Pluijm, S, Batenburg, L, de Ridder, H, Hollema, N, Teunissen, L & Schellekens, A 2023, 'Psychosocial functioning of adult siblings of Dutch very long-term survivors of childhood cancer: DCCSS-LATER 2 psycho-oncology study', Psycho-Oncology, vol. 32, no. 9, pp. 1401-1411. https://doi.org/10.1002/pon.6191

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 - the Dutch LATER Study group

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.

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 -