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 6,165
five-year survivors diagnosed 1963-2001, we invited 4,735 eligible 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 sub-projects.
The regular care visit to the LATER outpatient clinic forms the backbone
of outcome assessment complemented with research-defined measurements
(physical examination, diagnostic tests, questionnaires). Furthermore,
blood/saliva samples were taken for DNA extraction.
Results In total, 2519 (53.2%) survivors participated in the
LATER 2 study. Of those participating survivors, 49.3% was female.
Median time since childhood cancer diagnosis was 26.9 years (range 14.8
to 54.7 years) and median attained age was 34.4 years (range 15.4 to
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 (psychosocial) health outcomes and factors for early
recognition of (psychosocial) 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.