Methodology of the DCCSS later fatigue study: a model to investigate chronic fatigue in long-term survivors of childhood cancer

Adriaan Penson*, Sylvia van Deuren, Ewald Bronkhorst, Ellen Keizer, Tom Heskes, Marieke J.H. Coenen, Judith G.M. Rosmalen, Wim J.E. Tissing, Helena J.H. van der Pal, Andrica C.H. de Vries, Marry van den Heuvel-Eibrink, Sebastian Neggers, Birgitta A.B. Versluys, Marloes Louwerens, Margriet van der Heiden-van der Loo, Saskia M.F. Pluijm, Martha Grootenhuis, Nicole Blijlevens, Leontien C.M. Kremer, Eline van Dulmen-den BroederHans Knoop, Jacqueline Loonen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

4 Citations (Scopus)


Background: A debilitating late effect for childhood cancer survivors (CCS) is cancer-related fatigue (CRF). Little is known about the prevalence and risk factors of fatigue in this population. Here we describe the methodology of the Dutch Childhood Cancer Survivor Late Effect Study on fatigue (DCCSS LATER fatigue study). The aim of the DCCSS LATER fatigue study is to examine the prevalence of and factors associated with CRF, proposing a model which discerns predisposing, triggering, maintaining and moderating factors. Triggering factors are related to the cancer diagnosis and treatment during childhood and are thought to trigger fatigue symptoms. Maintaining factors are daily life- and psychosocial factors which may perpetuate fatigue once triggered. Moderating factors might influence the way fatigue symptoms express in individuals. Predisposing factors already existed before the diagnosis, such as genetic factors, and are thought to increase the vulnerability to develop fatigue. Methodology of the participant inclusion, data collection and planned analyses of the DCCSS LATER fatigue study are presented. Results: Data of 1955 CCS and 455 siblings was collected. Analysis of the data is planned and we aim to start reporting the first results in 2022. Conclusion: The DCCSS LATER fatigue study will provide information on the epidemiology of CRF and investigate the role of a broad range of associated factors in CCS. Insight in associated factors for fatigue in survivors experiencing severe and persistent fatigue may help identify individuals at risk for developing CRF and may aid in the development of interventions.

Original languageEnglish
Article number106
JournalBMC Medical Research Methodology
Issue number1
Publication statusPublished - 16 May 2021

Bibliographical note

Funding Information:
The program was funded by KIKA/ODAS (grant 171 ‘DCOG LATER program’) and the Dutch Cancer Society (grant KUN 2014–6985).

Publisher Copyright:
© 2021, The Author(s).


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