Questionnaire‐ and linkage‐based outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER study part 1. (15th December 2022)

• Record Type: Journal Article
• Authors: Teepen, Jop C.; Kok, Judith L.; Feijen, Elizabeth A. M.; Loonen, Jacqueline J.; van den Heuvel‐Eibrink, Marry M.; van der Pal, Helena J.; Tissing, Wim J. E.; Bresters, Dorine; Versluys, Birgitta; Grootenhuis, Martha A.; Louwerens, Marloes; Neggers, Sebastian J. C. M. M.; van Santen, Hanneke M.; de Vries, Andrica; Janssens, Geert O.; den Hartogh, Jaap G.; van Leeuwen, Flora E.; Hollema, Nynke; Streefkerk, Nina; Kilsdonk, Ellen; van der Heiden‐van der Loo, Margriet; van Dulmen‐den Broeder, Eline; Ronckers, Cécile M.; Kremer, Leontien C. M.
• Is Part Of: Cancer medicine. Volume 12:Number 6(2023)
• Page Start: 7588
• Page End: 7602
• Publication Date: 2022-12-15
• Subjects: childhood cancer survivors -- cohort studies -- health outcomes -- linkage -- methodology -- surveys and questionnaires; 616.994005
• DOI: 10.1002/cam4.5519
• Languages: English
• ISSNs: 2045-7634

Abstract

Abstract: Background: Childhood cancer survivors are at risk for developing long‐term adverse health outcomes. To identify the risk of and risk factors for specific health outcomes, well‐established cohorts are needed with detailed information on childhood cancer diagnosis, treatment, and health outcomes. We describe the design, methodology, characteristics, and data availability of the Dutch Childhood Cancer Survivor Study LATER cohort (1963–2001) part 1; questionnaire and linkage studies. Methods: The LATER cohort includes 5‐year childhood cancer survivors, diagnosed in the period 1963–2001, and before the age of 18 in any of the seven former pediatric oncology centers in the Netherlands. Information on health outcomes from survivors and invited siblings of survivors was collected by questionnaires and linkages to medical registries. Results: In total, 6165 survivors were included in the LATER cohort. Extensive data on diagnosis and treatment have been collected. Information on a variety of health outcomes has been ascertained by the LATER questionnaire study and linkages with several registries for subsequent tumors, health care use, and hospitalizations. Conclusion: Research with data of the LATER cohort will provide new insights into risks of and risk factors for long‐term health outcomes. This can enhance risk stratification for childhood cancer survivors and inform surveillance guidelines and development of interventions to prevent (the impact of) long‐term adverse health outcomes. The data collected will be a solid baseline foundation for future follow‐up studies. Abstract : The Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort includes a large, unselected multi‐center cohort of childhood cancer survivors with an unprecedented combination of detailed, individual‐level data on diagnosis and treatment and highly complete outcome data on various long‐term health outcomes. This Figure gives an overview on inclusion criteria and data collections of part 1 of the DCCSS LATER study.