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Published in: BMC Medical Research Methodology 1/2021

Open Access 01-12-2021 | Cancer Fatigue | Research

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

Authors: 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 M. 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 Broeder, Hans Knoop, Jacqueline Loonen

Published in: BMC Medical Research Methodology | Issue 1/2021

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Abstract

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.
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Metadata
Title
Methodology of the DCCSS later fatigue study: a model to investigate chronic fatigue in long-term survivors of childhood cancer
Authors
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 M. 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 Broeder
Hans Knoop
Jacqueline Loonen
Publication date
01-12-2021
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2021
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/s12874-021-01298-7

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