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| European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society. 2015 Jul 26. pii: S1090-3798(15)00139-7. doi: 10.1016/j.ejpn.2015.07.011 |
| Strategies to improve the quality of survival for childhood brain tumour survivors. |
| Tallen G1, Resch A2, Calaminus G3, Wiener A4, Leiss U5, Pletschko T6, Friedrich C7, Langer T8, Grabow D9, Driever PH10, Kortmann RD11, Timmermann B12, Pietsch T13, Warmuth-Metz M14, Bison B15, Thomale UW16, Krauss J17, Mynarek M18, von Hoff K19, Ottensmeier H20, Frühwald M21, Kramm CM22, Temming P23, Müller HL24, Witt O25, Kordes U26, Fleischhack G27, Gnekow A28, Rutkowski S29 |
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Abstract BACKGROUND: Tumours of the central nervous system (CNS) are the most frequent solid tumours and the second most frequent type of cancer in children and adolescents. Overall survival has continuously improved in Germany, since an increasing number of patients have been treated according to standardised, multicentre, multimodal treatment recommendations, trials of the German Paediatric Brain Tumour Consortium (HIT-Network) or the International Society of Paediatric Oncology-Europe (SIOP-E) during the last decades. Today, two out of three patients survive. At least 8000 long-term childhood brain tumour survivors (CBTS) are currently living in Germany. They face lifelong disease- and treatment-related late effects (LE) and associated socioeconomic problems more than many other childhood cancer survivors (CCS). METHOD: We review the LE and resulting special needs of this particular group of CCS. RESULTS: Despite their increasing relevance for future treatment optimisation, neither the diversity of chronic and cumulative LE nor their pertinent risk factors and subsequent impact on quality of survival have yet been comprehensively addressed for CBTS treated according to HIT- or SIOP-E-protocols. Evidence-based information to empower survivors and stakeholders, as well as medical expertise to manage their individual health care, psychosocial and educational/vocational needs must still be generated and established. CONCLUSION: The establishment of a long-term research- and care network in Germany shall contribute to a European platform, that aims at optimising CBTSs' transition into adulthood as resilient individuals with high quality of survival including optimal levels of activity, participation and acceptance by society. |
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Copyright © 2015 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. |
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KEYWORDS: Childhood brain tumour, Childhood cancer survivor, Late effects, Long-term care, Quality of survival |
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Publikations ID: 26278499 Quelle: öffnen |
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