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

Elizabeth A M Feijen ,
Jop C Teepen ,
Eline van Dulmen-den Broeder ,
Marry M van den Heuvel-Eibrink ,
Margriet van der Heiden-van der Loo ,
Helena J H van der Pal ,
Andrica C H de Vries ,
Marloes Louwerens ,
Dorine Bresters ,
Birgitta Versluys ,
Hanneke de Ridder ,
Margreet Veening ,
Flora E van Leeuwen ,
Martha Grootenhuis ,
Heleen Maurice-Stam ,
Hanneke M van Santen ,
Sebastian J C M M Neggers ,
Saskia Pluijm ,
Jaap den Hartogh ,
Cécile M Ronckers ,
Wim J E Tissing ,
Jacqueline J Loonen ,
Leontien C M Kremer

Abstract

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.

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).

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.

More about this publication

Pediatric blood & cancer

Volume 70
Issue nr. 5
Pages e30212
Publication date 01-05-2023

Full text links

Publisher website (DOI) 10.1002/pbc.30212
Europe PubMed Central 36651687
Pubmed 36651687

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