Introduction
Advances in diagnosis and treatment of childhood cancer over the last
decades have dramatically increased long-term survival, with a 5-year
overall survival of more than 80%.1 As a result, the
number of childhood cancer survivors is growing and it has become
increasingly clear that the former disease and its treatment can
significantly impair long-term (psychosocial) health leading also to
premature mortality.2-5
In 2010 the Dutch Childhood Cancer Survivor Study (DCCSS) LATER
collaborative group finalized the LATER guideline for surveillance of
late effects in survivors of childhood cancer and identified
clinically-relevant gaps in knowledge.6 The DCCSS
group of clinicians, researchers, and representatives from the
patient-parent organization designed the DCCSS LATER cohort study,
currently consisting of 2 parts (Figure 1). In the LATER 1 observational
study, outcomes on health conditions were collected, through
questionnaires and linkages to national registries. The methods for this
study have been described in a separate paper.(Teepen et al. Joint
submission with current manuscript)
Here we describe the methodology and first results of the second wave of
health outcome measurements, the so-called LATER 2 study, which involves
clinical measurements.
All cohort members alive in 2016 were invited to participate in this
cross-sectional study, the backbone of which consists of the periodic
guideline-based regular care visit to the late effects outpatient
clinic.
The goals of the LATER 2 study are A) to identify and characterize
populations at high risk for medical and/or psychosocial chronic health
conditions associated with childhood cancer, its treatment, and other
risk factors such as lifestyle, B) to identify accurate screening tests
for adverse health outcomes in survivors of childhood cancer, C) to get
insight into the pathophysiological mechanisms and genetic
predisposition underlying the multi-factorial etiology of the studied
health outcomes, D) to identify groups of survivors who may benefit from
interventions and preventive measures and to identify subgroups who will
likely not benefit from such actions.
To achieve these goals, the DCCSS LATER study group designed, a priori,
16 sub-studies based on health outcomes (Supplemental information Table
1). Eligible survivors were invited to undergo diagnostic tests and
questionnaires for research purposes, in addition to the diagnostic
tests during regular care, based on the LATER guidelines. This paper
describes the methodological aspects of the overall LATER 2 study;
clinical visit & questionnaire study. The specific methodologies of
sub-studies will be described in separate papers.