Abstract
BackgroundA 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.ResultsData 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.ConclusionThe 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.
Highlights
A debilitating late effect for childhood cancer survivors (CCS) is cancer-related fatigue (CRF)
CRF most likely has a negative impact on quality of life (QoL) but far this has only been investigated in subgroups of CCS [8, 9]
4735 eligible CCS participants were invited to participate in the DCCSS Late Effects after Childhood Cancer (LATER) study
Summary
A debilitating late effect for childhood cancer survivors (CCS) is cancer-related fatigue (CRF). The National Comprehensive Cancer Network (NCCN) has defined CRF as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer and/or cancer treatment that is not proportional to recent activity and interferes with usual functioning [6]. It differs from fatigue experienced by healthy individuals; CRF is more severe, more distressing, leads to disability and is less likely to be relieved by rest [7]. CRF most likely has a negative impact on quality of life (QoL) but far this has only been investigated in subgroups of CCS [8, 9]
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