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Endocrine

, 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

Abstract

Context

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.

Results

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).

Conclusions

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.

Keywords

Craniopharyngioma Hypothalamus Obesity Height Quality of life Growth hormone 

Abbreviations

CP

craniopharyngioma

GH

growth hormone

QoL

quality of life

MRI

magnetic resonance imaging

BMI

body mass index

PEDQOL

Pediatric Quality of Life questionnaire

Notes

Acknowledgements

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.

References

  1. 1.
    H.L. Muller, Craniopharyngioma. Endocr. Rev. 35, 513–543 (2014)CrossRefPubMedGoogle Scholar
  2. 2.
    H.L. Muller, T.E. Merchant, S. Puget, J.P. Martinez-Barbera, New outlook on the diagnosis, treatment and follow–up of childhood-onset craniopharyngioma. Nat. Rev. Endocrinol. 13, 299–312 (2017)CrossRefPubMedGoogle Scholar
  3. 3.
    C.J. de Vile, D.B. Grant, R.D. Hayward, B.E. Kendall, B.G. Neville, R. Stanhope, Obesity in childhood craniopharyngioma: relation to post-operative hypothalamic damage shown by magnetic resonance imaging. J. Clin. Endocrinol. Metab. 81, 2734–2737 (1996)PubMedGoogle Scholar
  4. 4.
    A. Bereket, W. Kiess, R.H. Lustig et al., Hypothalamic obesity in children. Obes. Rev. 13, 780–798 (2012)CrossRefPubMedGoogle Scholar
  5. 5.
    H.L. Muller, A. Emser, A. Faldum et al., Longitudinal study on growth and body mass index before and after diagnosis of childhood craniopharyngioma. J. Clin. Endocrinol. Metab. 89, 3298–3305 (2004)CrossRefPubMedGoogle Scholar
  6. 6.
    B. Ergun-Longmire, A.C. Mertens, P. Mitby et al., Growth hormone treatment and risk of second neoplasms in the childhood cancer survivor. J. Clin. Endocrinol. Metab. 91, 3494–3498 (2006)CrossRefPubMedGoogle Scholar
  7. 7.
    J.E. Chaplin, B. Kristrom, B. Jonsson et al., Improvements in behaviour and self-esteem following growth hormone treatment in short prepubertal children. Horm. Res Paediatr. 75, 291–303 (2011)CrossRefPubMedGoogle Scholar
  8. 8.
    H.L. Muller, Consequences of craniopharyngioma surgery in children. J. Clin. Endocrinol. Metab. 96, 1981–1991 (2011)CrossRefPubMedGoogle Scholar
  9. 9.
    H.L. Muller, U. Gebhardt, C. Teske et al., Post-operative hypothalamic lesions and obesity in childhood craniopharyngioma: results of the multinational prospective trial KRANIOPHARYNGEOM 2000 after 3-year follow-up. Eur. J. Endocrinol. 165, 17–24 (2011)CrossRefPubMedGoogle Scholar
  10. 10.
    H.L. Muller, U. Gebhardt, N. Etavard-Gorris et al., Prognosis and sequela in patients with childhood craniopharyngioma – results of HIT-ENDO and update on KRANIOPHARYNGEOM 2000. Klin. Padiatr. 216, 343–348 (2004)CrossRefPubMedGoogle Scholar
  11. 11.
    A. Prader, R.H. Largo, L. Molinari, C. Issler, Physical growth of Swiss children from birth to 20 years of age. First Zurich longitudinal study of growth and development. Helv. Paediatr. Acta Suppl. 52, 1–125 (1989)PubMedGoogle Scholar
  12. 12.
    M.F. Rolland-Cachera, T.J. Cole, M. Sempe, J. Tichet, C. Rossignol, A. Charraud, Body Mass Index variations: centiles from birth to 87 years. Eur. J. Clin. Nutr. 45, 13–21 (1991)PubMedGoogle Scholar
  13. 13.
    G. Calaminus, S. Weinspach, C. Teske, U. Gobel, Quality of life in children and adolescents with cancer. First results of an evaluation of 49 patients with the PEDQOL questionnaire. Klin. Padiatr. 212, 211–215 (2000)CrossRefPubMedGoogle Scholar
  14. 14.
    J.E. Wolff, E. Daumling, A. Dirksen, A. Dabrock, M. Hartmann, H. Jurgens, [Munster Heidelberg Abilities Scale–a measuring instrument for global comparison of illness sequelae]. Klin. Padiatr. 208, 294–298 (1996)CrossRefPubMedGoogle Scholar
  15. 15.
    H.L. Muller, U. Gebhardt, A. Faldum et al., Functional capacity and body mass index in patients with sellar masses-cross-sectional study on 403 patients diagnosed during childhood and adolescence. Childs Nerv. Sys 21, 539–545 (2005)CrossRefGoogle Scholar
  16. 16.
    A.M. Pereira, E.M. Schmid, P.J. Schutte et al., High prevalence of long-term cardiovascular, neurological and psychosocial morbidity after treatment for craniopharyngioma. Clin. Endocrinol. 62, 197–204 (2005)CrossRefGoogle Scholar
  17. 17.
    B. Bulow, R. Attewell, L. Hagmar, P. Malmstrom, C.H. Nordstrom, E.M. Erfurth, Postoperative prognosis in craniopharyngioma with respect to cardiovascular mortality, survival, and tumor recurrence. J. Clin. Endocrinol. Metab. 83, 3897–3904 (1998)PubMedGoogle Scholar
  18. 18.
    J.W. Tomlinson, N. Holden, R.K. Hills et al., Association between premature mortality and hypopituitarism. West Midlands Prospective Hypopituitary Study Group. Lancet 357, 425–431 (2001)CrossRefPubMedGoogle Scholar
  19. 19.
    H.L. Muller, K. Bueb, U. Bartels et al., Obesity after childhood craniopharyngioma–German multicenter study on pre-operative risk factors and quality of life. Klin. Padiatr. 213, 244–249 (2001)CrossRefPubMedGoogle Scholar
  20. 20.
    P. Kendall-Taylor, P.J. Jonsson, R. Abs et al., The clinical, metabolic and endocrine features and the quality of life in adults with childhood-onset craniopharyngioma compared with adult-onset craniopharyngioma. Eur. J. Endocrinol. 152, 557–567 (2005)CrossRefPubMedGoogle Scholar
  21. 21.
    H.K. Gleeson, R. Stoeter, A.L. Ogilvy-Stuart, H.R. Gattamaneni, B.M. Brennan, S.M. Shalet, Improvements in final height over 25 years in growth hormone (GH)-deficient childhood survivors of brain tumors receiving GH replacement. J. Clin. Endocrinol. Metab. 88, 3682–3689 (2003)CrossRefPubMedGoogle Scholar
  22. 22.
    M. Geffner, M. Lundberg, M. Koltowska-Haggstrom et al., Changes in height, weight, and body mass index in children with craniopharyngioma after 3 years of growth hormone therapy: analysis of KIGS (Pfizer International Growth Database). J. Clin. Endocrinol. Metab. 89, 5435–5440 (2004)CrossRefPubMedGoogle Scholar
  23. 23.
    D.A. Price, P. Wilton, P. Jonsson et al., Efficacy and safety of growth hormone treatment in children with prior craniopharyngioma: an analysis of the Pharmacia and Upjohn International Growth Database (KIGS) from 1988 to 1996. Horm. Res. 49, 91–97 (1998)PubMedGoogle Scholar
  24. 24.
    K.C. Yuen, M. Koltowska-Haggstrom, D.M. Cook et al., Clinical characteristics and effects of GH replacement therapy in adults with childhood-onset craniopharyngioma compared with those in adults with other causes of childhood-onset hypothalamic-pituitary dysfunction. Eur. J. Endocrinol. 169, 511–519 (2013)CrossRefPubMedGoogle Scholar
  25. 25.
    I.C. Huang, E.A. Shenkman, W. Leite, C.A. Knapp, L.A. Thompson, D.A. Revicki, Agreement was not found in adolescents’ quality of life rated by parents and adolescents. J. Clin. Epidemiol. 62, 337–346 (2009)CrossRefPubMedGoogle Scholar
  26. 26.
    A. Poretti, M.A. Grotzer, K. Ribi, E. Schonle, E. Boltshauser, Outcome of craniopharyngioma in children: long-term complications and quality of life. Dev. Med. Child. Neurol. 46, 220–229 (2004)CrossRefPubMedGoogle Scholar
  27. 27.
    R.B. Levi, D. Drotar, Health-related quality of life in childhood cancer: discrepancy in parent-child reports. Int. J. Cancer Suppl. 2, 58–64 (1999)CrossRefGoogle Scholar
  28. 28.
    Y.H. Vance, R.C. Morse, M.E. Jenney, C. Eiser, Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health. J. Child. Psychol. Psychiatry 42, 661–667 (2001)CrossRefPubMedGoogle Scholar
  29. 29.
    J. Verhelst, P. Kendall-Taylor, E.M. Erfurth et al., Baseline characteristics and response to 2 years of growth hormone (GH) replacement of hypopituitary patients with GH deficiency due to adult-onset craniopharyngioma in comparison with patients with nonfunctioning pituitary adenoma: data from KIMS (Pfizer International Metabolic Database). J. Clin. Endocrinol. Metab. 90, 4636–4643 (2005)CrossRefPubMedGoogle Scholar
  30. 30.
    J.N. Roemmich, M.G. Huerta, S.M. Sundaresan, A.D. Rogol, Alterations in body composition and fat distribution in growth hormone-deficient prepubertal children during growth hormone therapy. Metabolism 50, 537–547 (2001)CrossRefPubMedGoogle Scholar
  31. 31.
    M.E. Geffner, The growth without growth hormone syndrome. Endocrinol. Metab. Clin. North. Am. 25, 649–663 (1996)CrossRefPubMedGoogle Scholar
  32. 32.
    S. Srinivasan, G.D. Ogle, S.P. Garnett, J.N. Briody, J.W. Lee, C.T. Cowell, Features of the metabolic syndrome after childhood craniopharyngioma. J. Clin. Endocrinol. Metab. 89, 81–86 (2004)CrossRefPubMedGoogle Scholar
  33. 33.
    K.C. Calman, Quality of Life in cancer patients - an hypothesis. J. Med. Ethics 10, 124–127 (1984)CrossRefPubMedPubMedCentralGoogle Scholar

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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