Late Effects in Survivors of Childhood CNS Tumors: Review of Results From the Two Largest Survivorship Cooperative Groups

Background: With improved treatments, a large majority of children (>70%) with central nervous system (CNS) tumors will become long term survivors. These survivors are at risk for adverse long term outcomes, also known as ‘late effects.’ This realization has led to tremendous levels of large scale organizational resources being used to better characterize late effects in an effort to provide evidence-based long term survivorship care to these survivors. Methods: In this article, we present a summary of findings from the two largest survivorship cooperative research groups, the Childhood Cancer Survivor Study and the British Childhood Cancer Survivor Study. We have extensively reviewed the peer-reviewed articles published by these two cooperative groups who have collectively published large amounts of relevant data on late effects in over four thousand survivors of childhood CNS tumors. Results: Survivors of childhood CNS tumors are at risk for several late effects related to sensory complications, endocrinopathies, neurological issues, secondary malignancies, cardio-pulmonary issues, dental problems, neuro-cognitive deficits and decreased quality of life. Several risk factors contribute to the development of specific late effects including those related to inherent patient characteristics, primary malignancy and treatment modalities. Conclusions: Childhood CNS tumor survivors are at risk of developing a wide spectrum of late effects. Health care practitioners, patients and parents should be aware of them. Decisions regarding treatment should take risk factors into account. Appropriate guideline-based care should be provided to these patients. Identification of potential risk factors and subsequent late effects may guide the development of future treatment protocols.