Psychosocial functioning of parents of Dutch long-term survivors of childhood cancer

Marloes van Gorp, Mala M.H. Joosten, the Dutch LATER Study group, Anne Maas, Babet L. Drenth, Alied van der Aa–van Delden, 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*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

3 Citations (Scopus)
53 Downloads (Pure)

Abstract

Objective: To describe health-related quality of life (HRQoL), post-traumatic stress and post-traumatic growth of parents of long-term survivors of childhood cancer (CCS) and study associated factors. Methods: Parents of survivors of the Dutch Childhood Cancer Survivor Study LATER cohort below 30 years and diagnosed 1986–2001 were invited to complete the TNO-AZL Questionnaire for Adult's HRQoL (e.g., sleep and aggressive emotions), Self-Rating Scale for Post-traumatic Stress Disorder, Post-traumatic Growth Inventory, and Illness Cognition Questionnaire. HRQoL domain scores were compared to references using Mann-Whitney U tests. Correlations between post-traumatic stress, growth and HRQoL were evaluated. Medical characteristics of their child and illness cognitions were studied as associated factors of HRQOL, post-traumatic stress and growth. p < 0.05 was considered statistically significant. Results: Parents (n = 661 of n = 448 survivors, 56% female, mean time since child's diagnosis: 21.3 [SD: 3.3] years) reported better HRQoL in social functioning and aggressive emotions than references (r =.08–0.17). Mothers additionally reported better HRQoL in pain, daily activities, sexuality, vitality, positive and depressive emotions (r =.07–0.14). Post-traumatic stress was symptomatic in 3%, and associated with worse HRQoL (r = −0.27–0.48). Post-traumatic growth was positively associated to post-traumatic stress and better HRQoL (r = 0.09–0.12). Cancer recurrence was associated to better HRQoL (β = 0.37–0.46). Acceptance illness cognitions were associated to better (β = 0.12–0.25), and helplessness to worse outcomes (β = 0.14–0.38). Conclusions: HRQoL of parents of young adult survivors of CCS is comparable to references or slightly better. Only a small proportion reports symptomatic post-traumatic stress. Improving acceptance and reducing feelings of helplessness may provide treatment targets for parents with psychosocial problems.

Original languageEnglish
Pages (from-to)283-294
Number of pages12
JournalPsycho-Oncology
Volume32
Issue number2
Early online date25 Nov 2022
DOIs
Publication statusPublished - Feb 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 parents for their contribution. Funding for this study was provided by KIKA.

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 parents for their contribution. Funding for this study was provided by KIKA.

Publisher Copyright:
© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

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