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Open Access 11-05-2023 | Psycho-oncology

Positive and negative survivor-specific psychosocial consequences of childhood cancer: the DCCSS-LATER 2 psycho-oncology study

Authors: Anne Maas, Heleen Maurice-Stam, Alied M. van der Aa-van Delden, Elvira C. van Dalen, 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, Geert O. Janssens, Cécile Ronckers, Sebastian Neggers, Dorine Bresters, Marloes Louwerens, Birgitta A. B. Versluys, Margriet van der Heiden-van der Loo, Leontien C. M. Kremer, Marloes van Gorp, Martha A. Grootenhuis, on behalf of the Dutch LATER study group

Published in: Journal of Cancer Survivorship

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Abstract

Purpose

Numerous studies investigated generic psychosocial outcomes in survivors of childhood cancer (CCS). The present study aimed to describe survivor-specific psychosocial consequences in CCS, and to identify socio-demographic and medical associated factors.

Methods

CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963–2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed the Benefit & Burden Scale (BBSC) and the Impact of Cancer–Childhood Cancer (IOC-CS). Items were scored on a 5-point Likert scale (range 1–5). We examined outcomes with descriptive statistics, and socio-demographic and medical associated factors with regression analyses, corrected for multiple testing (< 0.004).

Results

CCS, N = 1713, age mean (M) 36 years, 49% female, ≥ 15 years since diagnosis, participated. On average, CCS reported ‘somewhat’ Benefit (M = 2.9), and ‘not at all’ to ‘a little’ Burden (M = 1.5) of childhood cancer. Average scores on IOC-CS’ positive impact scales ranged from 2.5 (Personal Growth) to 4.1 (Socializing), and on the negative impact scales from 1.4 (Financial Problems) to 2.4 (Thinking/Memory). Apart from cognitive problems, CCS reported challenges as worries about relationship status, fertility, and how cancer had affected siblings. Female sex was associated with more Personal Growth, and more negative impact. CCS more highly educated, partnered, and employed had higher positive and lower negative impact. CCS older at diagnosis reported more positive impact. CNS tumor survivors and those who had head/cranium radiotherapy had higher negative impact. CNS tumor survivors reported less positive impact.

Conclusion and implications

The majority of CCS reported positive impact of cancer while most CCS reported little negative impact. While this may indicate resiliency in most CCS, health care providers should be aware that they can also experience survivor-specific challenges that warrant monitoring/screening, information provision and psychosocial support.
Appendix
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Metadata
Title
Positive and negative survivor-specific psychosocial consequences of childhood cancer: the DCCSS-LATER 2 psycho-oncology study
Authors
Anne Maas
Heleen Maurice-Stam
Alied M. van der Aa-van Delden
Elvira C. van Dalen
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
Geert O. Janssens
Cécile Ronckers
Sebastian Neggers
Dorine Bresters
Marloes Louwerens
Birgitta A. B. Versluys
Margriet van der Heiden-van der Loo
Leontien C. M. Kremer
Marloes van Gorp
Martha A. Grootenhuis
on behalf of the Dutch LATER study group
Publication date
11-05-2023
Publisher
Springer US
Published in
Journal of Cancer Survivorship
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-023-01394-1
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