Strategies to improve the quality of survival for childhood brain tumour survivors

Gesche Tallen; Anika Resch; Gabriele Calaminus; Andreas Wiener; Ulrike Leiss; Thomas Pletschko; Carsten Friedrich; Thorsten Langer; Desiree Grabow; Pablo Hernáiz Driever; Rolf-Dieter Kortmann; Beate Timmermann; Torsten Pietsch; Monika Warmuth-Metz; Brigitte Bison; Ulrich-Wilhelm Thomale; Jürgen Krauss; Martin Mynarek; Katja von Hoff; Holger Ottensmeier; Michael Frühwald; Christof M Kramm; Petra Temming; Hermann L Müller; Olaf Witt; Uwe Kordes; Gudrun Fleischhack; Astrid Gnekow; Stefan Rutkowski; German Paediatric Brain Tumour Consortium (HIT-Network)

doi:10.1016/j.ejpn.2015.07.011

Strategies to improve the quality of survival for childhood brain tumour survivors

Eur J Paediatr Neurol. 2015 Nov;19(6):619-39. doi: 10.1016/j.ejpn.2015.07.011. Epub 2015 Jul 26.

Authors

Gesche Tallen¹, Anika Resch², Gabriele Calaminus³, Andreas Wiener⁴, Ulrike Leiss⁵, Thomas Pletschko⁶, Carsten Friedrich⁷, Thorsten Langer⁸, Desiree Grabow⁹, Pablo Hernáiz Driever¹⁰, Rolf-Dieter Kortmann¹¹, Beate Timmermann¹², Torsten Pietsch¹³, Monika Warmuth-Metz¹⁴, Brigitte Bison¹⁵, Ulrich-Wilhelm Thomale¹⁶, Jürgen Krauss¹⁷, Martin Mynarek¹⁸, Katja von Hoff¹⁹, Holger Ottensmeier²⁰, Michael Frühwald²¹, Christof M Kramm²², Petra Temming²³, Hermann L Müller²⁴, Olaf Witt²⁵, Uwe Kordes²⁶, Gudrun Fleischhack²⁷, Astrid Gnekow²⁸, Stefan Rutkowski²⁹; German Paediatric Brain Tumour Consortium (HIT-Network)

Affiliations

¹ Department of Paediatric Oncology/Haematology, Charité-Universitätsmedizin Berlin, Campus Virchow, Augustenburger Platz 1, 13353 Berlin, Germany; Department of Paediatrics, Faculty of Medicine, University of Calgary, 2888 Shaganappi Trail N.W., Calgary, Alberta T3B 6A8, Canada. Electronic address: [email protected].
² Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: [email protected].
³ Department of Paediatric Haematology and Oncology, University Hospital Münster, Albert-Schweitzer-Campus 1, 48149 Münster, Germany. Electronic address: [email protected].
⁴ Department of Paediatric Haematology and Oncology, University Hospital Münster, Albert-Schweitzer-Campus 1, 48149 Münster, Germany. Electronic address: [email protected].
⁵ Medical University Vienna, Department of Paediatric and Adolescent Medicine, Währinger Gürtel 18-20, 1090 Vienna, Austria. Electronic address: [email protected].
⁶ Medical University Vienna, Department of Paediatric and Adolescent Medicine, Währinger Gürtel 18-20, 1090 Vienna, Austria. Electronic address: [email protected].
⁷ Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany; Division of Paediatric Oncology, Haematology and Haemostaseology, Department of Woman's and Children's Health, University Hospital Leipzig, Liebigstr. 20a, 04103 Leipzig, Germany. Electronic address: [email protected].
⁸ Department of Paediatric Oncology/Haematology, University of Lübeck, Ratzeburger Allee 160, 23538 Lübeck, Germany. Electronic address: [email protected].
⁹ German Childhood Cancer Registry (GCCR), Institute of Medical Biostatistics, Epidemiology, and Informatics (IMBEI), University Medical Center, University of Mainz, Gebäude 902, Obere Zahlbacher Straße 69, 55131 Mainz, Germany. Electronic address: [email protected].
¹⁰ Department of Paediatric Oncology/Haematology, Charité-Universitätsmedizin Berlin, Campus Virchow, Augustenburger Platz 1, 13353 Berlin, Germany. Electronic address: [email protected].
¹¹ Department of Radiation Oncology, University of Leipzig, Stephanstr. 9a, 04103 Leipzig, Germany. Electronic address: [email protected].
¹² Particle Therapy Clinic at West German Proton Therapy Centre Essen, University Hospital Essen, Hufelandstr. 55, 45147 Essen, Germany. Electronic address: [email protected].
¹³ Institute of Neuropathology, University of Bonn, Sigmund-Freud-Str. 25, 53105 Bonn, Germany. Electronic address: [email protected].
¹⁴ Dept. of Neuroradiology, University of Würzburg, Josef-Schneider-Str. 11, 97080 Würzburg, Germany. Electronic address: [email protected].
¹⁵ Dept. of Neuroradiology, University of Würzburg, Josef-Schneider-Str. 11, 97080 Würzburg, Germany. Electronic address: [email protected].
¹⁶ Department of Paediatric Neurosurgery, Charité-Universitätsmedizin Berlin, Campus Virchow, Augustenburger Platz 1, 13353 Berlin, Germany. Electronic address: [email protected].
¹⁷ Department of Neurosurgery, Head Clinic, University of Würzburg, Josef-Schneider-Str. 11, 97080 Würzburg, Germany. Electronic address: [email protected].
¹⁸ Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: [email protected].
¹⁹ Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: [email protected].
²⁰ University Children's Hospital Würzburg, Dept. of Paed. Haematology, Oncology, Josef-Schneider-Str. 2, 97080 Würzburg, Germany. Electronic address: [email protected].
²¹ Department of Paediatric Oncology/Haematology, Klinikum Augsburg, Stenglinstr. 2, 86156 Augsburg, Germany. Electronic address: [email protected].
²² Division of Paediatric Haematology and Oncology, University of Göttingen, Robert-Koch-Str. 40, 37075 Göttingen, Germany. Electronic address: [email protected].
²³ Paediatric Haematology/Oncology, Paediatrics III, University of Essen, Hufelandstr. 55, 45147 Essen, Germany. Electronic address: [email protected].
²⁴ Paediatric Oncology/Haematology, Klinikum Oldenburg, Medical Campus University Oldenburg, Rahel-Straus-Str. 10, 26133 Oldenburg, Germany. Electronic address: [email protected].
²⁵ German Cancer Research Centre (DKFZ) and Department of Paediatric Oncology/Haematology, University of Heidelberg, Heidelberg, Im Neuenheimer Feld 280, 69120 Heidelberg, Germany. Electronic address: [email protected].
²⁶ Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: [email protected].
²⁷ Paediatric Haematology/Oncology, Paediatrics III, University of Essen, Hufelandstr. 55, 45147 Essen, Germany. Electronic address: [email protected].
²⁸ Department of Paediatric Oncology/Haematology, Klinikum Augsburg, Stenglinstr. 2, 86156 Augsburg, Germany. Electronic address: [email protected].
²⁹ Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: [email protected].

PMID: 26278499
DOI: 10.1016/j.ejpn.2015.07.011

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.

Keywords: Childhood brain tumour; Childhood cancer survivor; Late effects; Long-term care; Quality of survival.

Publication types

Research Support, Non-U.S. Gov't
Review

MeSH terms

Adolescent
Brain Neoplasms / complications*
Child
Europe
Female
Germany
Humans
Male
Quality of Life*
Risk Factors
Survivors / psychology*