, Volume 59, Issue 2, pp 364–372 | Cite as

Quality of life and growth after childhood craniopharyngioma: results of the multinational trial KRANIOPHARYNGEOM 2007

  • Kerstin Heinks
  • Svenja Boekhoff
  • Anika Hoffmann
  • Monika Warmuth-Metz
  • Maria Eveslage
  • Junxiang Peng
  • Gabriele Calaminus
  • Hermann L. MüllerEmail author
Original Article



Quality of life (QoL) after childhood-onset craniopharyngioma (CP) is frequently impaired due to tumor and/or treatment-related factors such as endocrine deficits and hypothalamic involvement/lesions.

Patients and methods

In a multinational trial, we prospectively analyzed parental and self-assessment of CP patient QoL at 3 months, 1 and 3 years after CP diagnosis related to growth hormone (GH) substitution. 47 of 194 CP recruited between 2007 and 2015 in KRANIOPHARYNGEOM 2007 were analyzed for QoL 1 and 3 years after CP diagnosis. QoL was assessed by Pediatric Quality of Life (PEDQOL) questionnaire and PEDQOL scores of parental and self-assessed QoL during 3 years follow-up after CP diagnosis were analyzed.


Parents estimated QoL of their children worse than patients did themselves. GH substitution had no relevant effect on short-term weight and height development. CP patients GH-treated at 3 years follow-up presented at baseline (1 year after diagnosis, before GH substitution) with reduced self-assessed QoL when compared with GH non-treated CP. QoL stabilized during 1–3 years of follow-up in GH-treated patients, whereas non GH-treated patients experienced decreases in autonomy (p = 0.03), cognition (p = 0.01), and physical function (p = 0.04).


Parents assess QoL in CP survivors worse than their children. GH substitution should be considered as a therapeutic option to ameliorate imminent impairments of QoL after CP.


Craniopharyngioma Hypothalamus Obesity Height Quality of life Growth hormone 





growth hormone


quality of life


magnetic resonance imaging


body mass index


Pediatric Quality of Life questionnaire



The authors want to thank all participating colleagues for recruiting patients in KRANIOPHARYNEOM 2007, and the patients and their parents for participating in this study.

Author contributions

K. H. researched the data and wrote the manuscript. A. H. contributed to the analytical plan and discussion and reviewed/edited the manuscript. S. B. conducted and supervised multicenter data collecting and reviewed/edited the manuscript. M. W. -M. performed reference–assessment of M. R. I. and reviewed/edited the manuscript. J. P. participated in data analyses, and reviewed/edited the manuscript. G. C. did the analyses on QoL/PEDQOL data, and reviewed/edited the manuscript, M. E. performed statistical analyses and reviewed/edited the manuscript. H. L. M. initiated and conducted the multicenter trial KRANIOPHARYNGEOM 2007, contributed to the analytical plan and discussion and reviewed/edited the manuscript.

Compliance with ethical standards

Conflict of interest

This study was funded by a grant (Forschungspool) of the European Medical School, Oldenburg, Germany, and a grant (DKKS2014.13) of the German Childhood Cancer Foundation (DKKS), Bonn, Germany. H.L.M. received grant support from Pfizer Pharma GmbH (WI178359), Lilly (MQS440-001-TL4-v3), and Ferring Pharmaceuticals (CS-10459). The authors declare that they have no competing interests.

Ethical approval

All procedures performed in our study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study was approved by the local standing-committee on ethical practice and written parental and/or patient consent was obtained in all cases.


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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2017

Authors and Affiliations

  • Kerstin Heinks
    • 1
  • Svenja Boekhoff
    • 1
  • Anika Hoffmann
    • 1
  • Monika Warmuth-Metz
    • 2
  • Maria Eveslage
    • 3
  • Junxiang Peng
    • 1
    • 4
  • Gabriele Calaminus
    • 5
  • Hermann L. Müller
    • 1
    Email author
  1. 1.Department of Pediatrics and Pediatric Hematology/OncologyKlinikum Oldenburg AöR, Medical Campus University OldenburgOldenburgGermany
  2. 2.Department of NeuroradiologyUniversity HospitalWürzburgGermany
  3. 3.Institute of of Biostatistics and Clinical Research, University MünsterMünsterGermany
  4. 4.Department of NeurosurgeryNanfang Hospital, Southern Medical UniversityGuangzhouChina
  5. 5.Department of Pediatric Oncology and HematologyUniversity HospitalBonnGermany

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