Questionnaire- and linkage-based outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER study part 1

被引：19

作者：

Teepen, Jop C. ^{[1
]}

Kok, Judith L. ^{[1
]}

Feijen, Elizabeth A. M. ^{[1
]}

Loonen, Jacqueline J. ^{[2
]}

van den Heuvel-Eibrink, Marry M. ^{[1
,3
]}

van der Pal, Helena J. ^{[1
]}

Tissing, Wim J. E. ^{[1
,4
]}

Bresters, Dorine ^{[1
]}

Versluys, Birgitta ^{[1
]}

Grootenhuis, Martha A. ^{[1
]}

Louwerens, Marloes ^{[5
]}

Neggers, Sebastian J. C. M. M. ^{[1
,6
]}

van Santen, Hanneke M. ^{[1
,7
]}

de Vries, Andrica ^{[1
,3
]}

Janssens, Geert O. ^{[1
,8
]}

den Hartogh, Jaap G. ^{[9
]}

van Leeuwen, Flora E. ^{[10
]}

Hollema, Nynke ^{[11
]}

Streefkerk, Nina ^{[1
,12
]}

Kilsdonk, Ellen ^{[1
]}

van der Heiden-van der Loo, Margriet ^{[1
]}

van Dulmen-den Broeder, Eline ^{[13
]}

Ronckers, Cecile M. ^{[1
,14
]}

Kremer, Leontien C. M. ^{[1
,15
,16
]}

机构：

[1] Princess Maxima Ctr Pediat Oncol, Heidelberglaan 25, NL-3584 CS Utrecht, Netherlands

[2] Radboud Univ Nijmegen, Radboudumc Ctr Expertise Canc Survivorship, Dept Hematol, Med Ctr, Nijmegen, Netherlands

[3] Erasmus MC, Dept Pediat Oncol Hematol, Rotterdam, Netherlands

[4] Univ Groningen, Univ Med Ctr Groningen, Dept Pediat Oncol Hematol, Groningen, Netherlands

[5] Leiden Univ, Dept Internal Med, Med Ctr, Leiden, Netherlands

[6] Erasmus MC, Dept Med, Rotterdam, Netherlands

[7] Univ Med Ctr Utrecht, Wilhelmina Childrens Hosp, Dept Pediat Endocrinol, Utrecht, Netherlands

[8] Univ Med Ctr Utrecht, Dept Radiat Oncol, Utrecht, Netherlands

[9] Dutch Childhood Canc Org, De Bilt, Netherlands

[10] Netherlands Canc Inst, Dept Epidemiol & Biostat, Amsterdam, Netherlands

[11] St Antonius Hosp, Dept Anesthesiol Intens Care & Pain Med, Nieuwegein, Netherlands

[12] Erasmus MC, Dept Pediat, Rotterdam, Netherlands

[13] Vrije Univ Amsterdam, Dept Pediat Oncol Hematol, Amsterdam UMC, Amsterdam, Netherlands

[14] Brandenburg Med Sch, Inst Biostat & Registry Res, Neuruppin, Germany

[15] Univ Med Ctr Utrecht, Wilhelmina Childrens Hosp, Utrecht, Netherlands

[16] Univ Amsterdam, Emma Childrens Hosp, Amsterdam UMC, Amsterdam, Netherlands

来源：

CANCER MEDICINE | 2023年 / 12卷 / 06期

关键词：

childhood cancer survivors; cohort studies; health outcomes; linkage; methodology; surveys and questionnaires; JUDE LIFETIME COHORT; LONG-TERM SURVIVORS; 5-YEAR SURVIVORS; INDUCED OTOTOXICITY; DCOG-LATER; RISK; PROFILE; DESIGN; NETHERLANDS; OBJECTIVES;

D O I：

10.1002/cam4.5519

中图分类号：

R73 [肿瘤学];

学科分类号：

100214 ;

摘要：

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.

引用

页码：7588 / 7602

页数：15

共 34 条

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