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

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.

Psychosocial functioning of parents of Dutch long‐term survivors of childhood cancer

“…Parents' age, sex, level of education and number of children were the included sociodemographic characteristics. The latter two were obtained from their survivor child in either DCCSS LATER two or DCCSS LATER 1 22 . Child medical characteristics were CNS diagnosis (vs. other diagnoses), recurrence, age at diagnosis and time since diagnosis, and were obtained from the DCCSS LATER registry 22 …”

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

“…Participating survivors and siblings were asked to complete a questionnaire on general health and lifestyle. Because survivors and siblings who participated in the LATER 1 questionnaire study in 2012-2014 7 already filled out extensive data on health and lifestyle, those persons were only asked to complete a short repeat version of this questionnaire focusing on main health outcomes only (Table S3). Survivors and siblings who did not participate in the LATER 1 questionnaire study were asked to complete the full questionnaire on general health and lifestyle (Table S3).…”

“…The methods for this study are described in a separate paper. 7 In this paper, we describe the methodology and provide the first To achieve these goals, the DCCSS LATER study group designed, a priori, 16 sub-studies based on health outcomes (Table S1). Eligible The specific methodologies of sub-studies will be described in separate papers.…”

Adverse late health outcomes among children treated with 3D radiotherapy techniques: Study design of the Dutch pediatric 3D‐RT study

“…Although small studies on specific childhood cancer types have reported on side effects of 3D-RT, 21 large-scale observational studies including follow-up of patients beyond the 5-year survival mark are rare to date. 22 This study has expanded upon the resources of the Dutch Childhood Cancer Survivor Study (DCCSS) LATER Cohort of 5-year CCS 10,11,23 with the purpose of filling this evidence gap. In particular, the overall aim of the Dutch Pediatric 3D-RT study is to evaluate adverse late health outcomes among children treated with radiotherapy in the era of CT-based treatment planning, and to assess dose response relationships for selected health outcomes.…”

“…This study has expanded upon the resources of the Dutch Childhood Cancer Survivor Study (DCCSS) LATER Cohort of 5‐year CCS 10 , 11 , 23 with the purpose of filling this evidence gap. In particular, the overall aim of the Dutch Pediatric 3D‐RT study is to evaluate adverse late health outcomes among children treated with radiotherapy in the era of CT‐based treatment planning, and to assess dose response relationships for selected health outcomes.…”