Long-Term Morbidity of Children with Brain Tumors

In Germany, approximately 500 children and adolescents are newly diagnosed with a tumor of the central nervous system per year. Two-thirds of those currently survive their disease after multimodal optimization of treatment, but frequently with severely compromised quality of survival due to sequelae from the disease itself or treatment: Neuropsychological, neurocognitive and neurological deficits, fatigue, audiotoxicity, visual disturbances, endocrinopathies, infertility, and secondary malignancies being most relevant. Also social reintegration, including capacitating for school and profession is complicated for survivors of CNS tumors. Examples for multimodal treatment optimization and the spectrum of late effects and neurocognitive assessments will be presented. So far, the observed deficits cannot be explained sufficiently by disease- or treatment-related causes or other predisposing factors. Therefore, “HITLife,” a national project for the assessment of late-effects in children with brain tumors within the ‚treatment-network HIT‘ has been initiated with support of the German Children’s Cancer Foundation (Deutsche Kinderkrebsstiftung). Potentially relevant components of disease (epidemiological data, age, tumor localization, histology, metastases, etc.), various treatment modalities applied (neurosurgery, type and doses of chemotherapy, doses and field of irradiation), other parameters (hydrocephalus, type of CSF-shunt, neurosurgical access, neurological deficits) and other individual factors (e.g., socioeconomic status, rehabilitation measures) and their impact on neurocognition and quality of survival will be assessed. Based on this, standardized guidelines and infrastructure for after-care shall be established appropriately for the specific needs of this particular group of brain tumor survivors.