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


METHODS
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.


CONCLUSIONS
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.
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: gesche.tallen@charite.de.
Gesche
G
Tallen
Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: a.resch@uke.de.
Anika
A
Resch
Department of Paediatric Haematology and Oncology, University Hospital Münster, Albert-Schweitzer-Campus 1, 48149 Münster, Germany. Electronic address: gabriele.calaminus@ukmuenster.de.
Gabriele
G
Calaminus
Department of Paediatric Haematology and Oncology, University Hospital Münster, Albert-Schweitzer-Campus 1, 48149 Münster, Germany. Electronic address: andreas.wiener@ukmuenster.de.
Andreas
A
Wiener
Medical University Vienna, Department of Paediatric and Adolescent Medicine, Währinger Gürtel 18-20, 1090 Vienna, Austria. Electronic address: ulrike.leiss@univie.ac.at.
Ulrike
U
Leiss
Medical University Vienna, Department of Paediatric and Adolescent Medicine, Währinger Gürtel 18-20, 1090 Vienna, Austria. Electronic address: thomas.pletschko@meduniwien.ac.at.
Thomas
T
Pletschko
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: carsten.friedrich@medizin.uni-leipzig.de.
Carsten
C
Friedrich
Department of Paediatric Oncology/Haematology, University of Lübeck, Ratzeburger Allee 160, 23538 Lübeck, Germany. Electronic address: thorsten.langer@uksh.de.
Thorsten
T
Langer
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: desiree.grabow@unimedizin-mainz.de.
Desiree
D
Grabow
Department of Paediatric Oncology/Haematology, Charité-Universitätsmedizin Berlin, Campus Virchow, Augustenburger Platz 1, 13353 Berlin, Germany. Electronic address: pablo.hernaiz@charite.de.
Pablo Hernáiz
PH
Driever
Department of Radiation Oncology, University of Leipzig, Stephanstr. 9a, 04103 Leipzig, Germany. Electronic address: rolf-dieter.kortman@medizin.uni-leipzig.de.
Rolf-Dieter
RD
Kortmann
Particle Therapy Clinic at West German Proton Therapy Centre Essen, University Hospital Essen, Hufelandstr. 55, 45147 Essen, Germany. Electronic address: beate.timmermann@uk-essen.de.
Beate
B
Timmermann
Institute of Neuropathology, University of Bonn, Sigmund-Freud-Str. 25, 53105 Bonn, Germany. Electronic address: Torsten.Pietsch@ukb.uni-bonn.de.
Torsten
T
Pietsch
Dept. of Neuroradiology, University of Würzburg, Josef-Schneider-Str. 11, 97080 Würzburg, Germany. Electronic address: warmuth_m@ukw.de.
Monika
M
Warmuth-Metz
Dept. of Neuroradiology, University of Würzburg, Josef-Schneider-Str. 11, 97080 Würzburg, Germany. Electronic address: bison_b@ukw.de.
Brigitte
B
Bison
Department of Paediatric Neurosurgery, Charité-Universitätsmedizin Berlin, Campus Virchow, Augustenburger Platz 1, 13353 Berlin, Germany. Electronic address: uthomale@charite.de.
Ulrich-Wilhelm
UW
Thomale
Department of Neurosurgery, Head Clinic, University of Würzburg, Josef-Schneider-Str. 11, 97080 Würzburg, Germany. Electronic address: krauss.j@ukw.de.
Jürgen
J
Krauss
Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: m.mynarek@uke.de.
Martin
M
Mynarek
Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: k.von-hoff@uke.de.
Katja
K
von Hoff
University Children's Hospital Würzburg, Dept. of Paed. Haematology, Oncology, Josef-Schneider-Str. 2, 97080 Würzburg, Germany. Electronic address: ottensmeie_h@ukw.de.
Holger
H
Ottensmeier
Department of Paediatric Oncology/Haematology, Klinikum Augsburg, Stenglinstr. 2, 86156 Augsburg, Germany. Electronic address: michael.fruehwald@klinikum-augsburg.de.
Michael
M
Frühwald
Division of Paediatric Haematology and Oncology, University of Göttingen, Robert-Koch-Str. 40, 37075 Göttingen, Germany. Electronic address: christof.kramm@med.uni-goettingen.de.
Christof M
CM
Kramm
Paediatric Haematology/Oncology, Paediatrics III, University of Essen, Hufelandstr. 55, 45147 Essen, Germany. Electronic address: petra.temming@uk-essen.de.
Petra
P
Temming
Paediatric Oncology/Haematology, Klinikum Oldenburg, Medical Campus University Oldenburg, Rahel-Straus-Str. 10, 26133 Oldenburg, Germany. Electronic address: mueller.hermann@klinikum-oldenburg.de.
Hermann L
HL
Müller
German Cancer Research Centre (DKFZ) and Department of Paediatric Oncology/Haematology, University of Heidelberg, Heidelberg, Im Neuenheimer Feld 280, 69120 Heidelberg, Germany. Electronic address: olaf.witt@med.uni-heidelberg.de.
Olaf
O
Witt
Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: kordes@uke.de.
Uwe
U
Kordes
Paediatric Haematology/Oncology, Paediatrics III, University of Essen, Hufelandstr. 55, 45147 Essen, Germany. Electronic address: gudrun.fleischhack@uk-essen.de.
Gudrun
G
Fleischhack
Department of Paediatric Oncology/Haematology, Klinikum Augsburg, Stenglinstr. 2, 86156 Augsburg, Germany. Electronic address: astrid.gnekow@klinikum-augsburg.de.
Astrid
A
Gnekow
Department of Paediatric Haematology and Oncology, University Medical Centre Hamburg-Eppendorf (UKE), Martinistr. 52, 20246 Hamburg, Germany. Electronic address: s.rutkowski@uke.de.
Stefan
S
Rutkowski
D000293:Adolescent; D001932:Brain Neoplasms / Q000150:complications*; D002648:Child; D005060:Europe; D005260:Female; D005858:Germany; D006801:Humans; D008297:Male; D011788:Quality of Life; D012307:Risk Factors; D017741:Survivors / Q000523:psychology*
Childhood brain tumour; Childhood cancer survivor; Late effects; Long-term care; Quality of survival