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Clinical evaluation of late outcomes in Dutch childhood cancer survivors:Methodology of the DCCSS LATER 2 study

Authors :
Feijen, Elizabeth A.M.
Teepen, Jop C.
van Dulmen-den Broeder, Eline
van den Heuvel-Eibrink, Marry M.
van der Heiden-van der Loo, Margriet
van der Pal, Helena J.H.
de Vries, Andrica C.H.
Louwerens, Marloes
Bresters, Dorine
Versluys, Birgitta
de Ridder, Hanneke
Veening, Margreet
van Leeuwen, Flora E.
Grootenhuis, Martha
Maurice-Stam, Heleen
van Santen, Hanneke M.
Neggers, Sebastian J.C.M.M.
Pluijm, Saskia
den Hartogh, Jaap
Ronckers, Cécile M.
Tissing, Wim J.E.
Loonen, Jacqueline J.
Kremer, Leontien C.M.
Feijen, Elizabeth A.M.
Teepen, Jop C.
van Dulmen-den Broeder, Eline
van den Heuvel-Eibrink, Marry M.
van der Heiden-van der Loo, Margriet
van der Pal, Helena J.H.
de Vries, Andrica C.H.
Louwerens, Marloes
Bresters, Dorine
Versluys, Birgitta
de Ridder, Hanneke
Veening, Margreet
van Leeuwen, Flora E.
Grootenhuis, Martha
Maurice-Stam, Heleen
van Santen, Hanneke M.
Neggers, Sebastian J.C.M.M.
Pluijm, Saskia
den Hartogh, Jaap
Ronckers, Cécile M.
Tissing, Wim J.E.
Loonen, Jacqueline J.
Kremer, Leontien C.M.
Source :
Feijen , E A M , Teepen , J C , van Dulmen-den Broeder , E , van den Heuvel-Eibrink , M M , van der Heiden-van der Loo , M , van der Pal , H J H , de Vries , A C H , Louwerens , M , Bresters , D , Versluys , B , de Ridder , H , Veening , M , van Leeuwen , F E , Grootenhuis , M , Maurice-Stam , H , van Santen , H M , Neggers , S J C M M , Pluijm , S , den Hartogh , J , Ronckers , C M , Tissing , W J E , Loonen , J J & Kremer , L C M 2023 , ' Clinical evaluation of late outcomes in Dutch childhood cancer survivors : Methodology of the DCCSS LATER 2 study ' , Pediatric Blood and Cancer , vol. 70 , no. 5 , e30212 .
Publication Year :
2023

Abstract

Background: Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer Survivor Study (DCCSS) cross-sectional clinical study (LATER 2 study). Procedure: From the multi-center DCCSS LATER cohort of 6165 five-year survivors diagnosed during 1963–2001, we invited 4735 eligible survivors in 2016, as well as siblings and parents of survivors. Gaps in evidence identified during development of surveillance guidelines were translated into clinical research questions for 16 outcome-specific subprojects. The regular care visit to the LATER outpatient clinic forms the backbone of outcome assessment complemented with research-defined measurements (physical examination, clinical tests, questionnaires). Furthermore, blood/saliva samples were taken for deoxyribonucleic acid (DNA) extraction. Results: In total, 2519 (53.2%) survivors participated in the LATER 2 study. When comparing participants with nonparticipants, we observed that males, CNS survivors, and those treated with surgery only were less likely to participate. Of the participating survivors, 49.3% were female. Median time since childhood cancer diagnosis was 26.9 years (range 14.8–54.7 years) and median attained age was 34.4 years (range 15.4–66.6 years). Conclusions: The high-quality data generated in the LATER 2 study will provide valuable insights into risks of and risk factors for clinical and physical and psychosocial health outcomes and factors for early recognition of those health outcomes in long-term childhood cancer survivors. This will contribute to fill in important gaps in knowledge and improve the quality of life and care for childhood cancer survivors.

Details

Database :
OAIster
Journal :
Feijen , E A M , Teepen , J C , van Dulmen-den Broeder , E , van den Heuvel-Eibrink , M M , van der Heiden-van der Loo , M , van der Pal , H J H , de Vries , A C H , Louwerens , M , Bresters , D , Versluys , B , de Ridder , H , Veening , M , van Leeuwen , F E , Grootenhuis , M , Maurice-Stam , H , van Santen , H M , Neggers , S J C M M , Pluijm , S , den Hartogh , J , Ronckers , C M , Tissing , W J E , Loonen , J J & Kremer , L C M 2023 , ' Clinical evaluation of late outcomes in Dutch childhood cancer survivors : Methodology of the DCCSS LATER 2 study ' , Pediatric Blood and Cancer , vol. 70 , no. 5 , e30212 .
Notes :
application/pdf, English
Publication Type :
Electronic Resource
Accession number :
edsoai.on1376785879
Document Type :
Electronic Resource