Clinical evaluation of late outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER 2 study. Issue 5 (18th January 2023)

• Record Type: Journal Article
• 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.
• Is Part Of: Pediatric blood & cancer. Volume 70:Issue 5(2023)
• Page Start: n/a
• Page End: n/a
• Publication Date: 2023-01-18
• Subjects: childhood cancer survivors -- clinical study -- late outcomes -- methodology -- questionnaires; Tumors in children -- Periodicals; Blood -- Diseases -- Periodicals; Cancer in children -- Periodicals; 618.92
• DOI: 10.1002/pbc.30212
• Languages: English
• ISSNs: 1545-5009

Abstract

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.