Quality of life and growth after childhood craniopharyngioma: results of the multinational trial KRANIOPHARYNGEOM 2007
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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.
KeywordsCraniopharyngioma Hypothalamus Obesity Height Quality of life 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.
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.
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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