Health problems in childhood cancer survivors: Linkage studies and guideline development

This thesis comprises two parts. The first part of this thesis aims to increase the evidence on the burden of disease in childhood cancer survivors and to define high-risk groups of survivors by using medical record linkage studies. A two-step record linkage methodology between Dutch national administrative registers and a Dutch study cohort of 5-year childhood cancer survivors is first presented. Subsequently, this thesis shows the application of this approach by examining trends in hospitalization rates of childhood cancer survivors and its associated risks factors in comparison with the general Dutch population. In addition, using a record linkage design, this thesis determines the likelihood of benchmarks for social development in adult childhood cancer survivors compared to the general Dutch population, and it uncovers its associated risk factors.
The second part of this thesis translates the evidence into concrete measures in the clinical practice such as clinical practice guidelines. It aims to promote uniform and high quality fertility preservation care for children, adolescents and young adults with cancer with the initiation of harmo¬nized, comprehensive and transparent clinical practice guidelines within the European Union-funded PanCareLIFE international collaborative project. This thesis presents, as a first step towards guideline development, the identification of existing clinical practice guidelines for fertility preservation in children, adolescents and young adults, the evaluation of their quality and the differences found in recommendations. Furthermore, the guideline development methodology for fertility preservation in children, adolescents and young adults with cancer within the PanCareLIFE context is presented in detail.