Health status, health-related quality of life, and socioeconomic outcome in childhood brain tumor survivors: a German cohort study

BACKGROUND: With rising numbers of childhood cancer survivors, somatic and socio-economic outcome as well as the health-related quality of life (QoL) gain increasing relevance. Based on the first nationwide German Survey on Life Situation, State of Health and Quality of Life of Childhood Cancer Survivors, the VIVE-survey, we report the outcome of survivors of childhood brain tumors (BTS) localized in the posterior fossa. METHODS: 270 participants with a median follow-up period of 21.9 years completed a questionnaire on socio-economic and somatic late-effects as well as a standardized QoL-questionnaire (EORTC QLQ-C30). Comparisons were performed between WHO I/II, WHO III/IV-BTS and the general population adjusting for potential confounders. RESULTS: The socio-economic and QoL results of WHO I/II-BTS were largely comparable to the general population while WHO III/IV-BTS were at higher risk for significantly worse outcomes. 36.8% of WHO III/IV-BTS were still living with their parents or in assisted living facilities compared to 16.1% of WHO I/II-BTS and 7.8% of the age-adjusted general population. 60.8% of WHO III/IV-BTS achieved at least an intermediate school degree in comparison to 80.5% of WHO I/II-BTS and 75.6% of the general population. WHO III/IV-BTS developed up to two times more somatic late-effects than WHO I/II. CONCLUSION: Derived from a large and homogenous cohort these results stress the importance of an appropriate follow-up period focusing not only on physical aspects but encompassing the entire living situation to allow patient-tailored support.