Project details


Quality of life and (psycho) social status after childhood craniopharyngioma in relation to diagnostic characteristics, clinical manifestations and therapy

obesity craniopharyngioma quality of life

prof. dr. H. Müller

Type of project:
Stage Wetenschap / Research project

Nature of the research:
1. Evaluation of the existing data set of a multicenter prospective study on patients with newly diagnosed childhood craniopharyngioma (KRANIOPHARYNGEOM 2000; recruitment period: 10/01-09/06) after three years of follow-up for long-term quality of survival in relation to tumour localization, therapy and ophthamological / endocrine manifestations. 2. Design of a short tool for evaluation of (psycho) social status in long-term survivors of childhood craniopharyngioma. 3. Cross-sectional evaluation of (psycho) social status by mailing out the designed questionnaire to appr. 400 patients and their siblings.

Fields of study:
health psychology pediatrics oncology

Background / introduction
Craniopharyngiomas (CP) are rare embryogenic malformations of the sellar area with low-grade histological malignancy (incidence: 0.5-2.0/106/y). 25 newly diagnosed children and adolescents are expected per year in Germany. Despite high survival rates (92%), the quality of life (QoL) is frequently impaired in long-term survivors due to sequelae caused by the anatomical proximity of CP to the optic nerve, pituitary gland, and hypothalamus [1-8]. In our cross-sectional study HIT-ENDO we analyzed 290 patients with CR in regard to hypothalamic involvement (HI), growth, obesity and QoL. 59% of all patients presented with HI at the time of diagnosis. Severe long-term obesity was related to HI and found to be a major risk factor for reduced QoL. Aware of possible bias due to retrospective analysis in our cross-sectional study, in KRANIOPHARYNGEOM 2000 we prospectively recruited 119 patients between 2001 and 2006 from 52 participating centers in Germany, Austria and Switzerland. We observed a 3-yrs-event free survival (EFS) of 0.44 ± 0.06, indicating high recurrence rates after complete resection (n=45; 3-yrs-EFS: 0.62 ± 0.09) and high progression rates after incomplete resection (n=64; 3-yrs-EFS: 0.30 ± 0.07). The study was supported by the Deutsche Kinderkrebsstiftung and conducted by the German Society for Paediatric Oncology (GPOH).
Research question / problem definition
Data on the overall- and event free survival rates in the analyzed patients’ cohort have been published [3]. The proposed project has the aim to analyze the impact of diagnostic characteristics, clinical manifestations and therapy on quality of life and (psycho) social status in recruited patients after 3 years of follow-up. Date on the parameters to be analyzed (tumor localization as categorized by reference panel, OS, EFS, QoL, surgical and radio-oncological therapy, endocrine and ophthalmological parameters baseline and during follow-up) were prospectively collected and are available with a high grade of completeness (>80%).
In addition to the analysis of the existing data sets on QoL, a new tool (questionnaire) on (psycho) social status will be designed (max. 10 items on social status such as BMI, education, job, marriage, children etc.). In a cross-sectional study, the questionnaire will be mailed to appr. 400 patients with childhood craniopharyngioma. The patient’s siblings will serve as “normal controls”.
The main questions of the studies are 1. to analyze changes in QoL between baseline and follow-up assessment in relation to risk factors in diagnostics, therapy and follow-up based on an existing data set. 2. to design a (new) questionnaire on (psycho) social status of patients with childhood craniopharyngioma and to use the tool in a cross-sectional study.

The aim of the study is to identify possible risk factors for impaired QoL and / or (psycho) social status of long-term survivors of childhood craniopharyngioma, which have to be taken into consideration for future recommendations and studies.
To elucidate the changes in QoL and the (psycho) social status of patients with childhood craniopharyngioma due to tumour- and treatment-related (risk)factors we plan to:
1. collaborate with the Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), German Childhood Cancer Registry at the University of Mainz, Germany.
2. collaborate with the task force for Quality of Life assessment (HIT-Leben, Dr. G. Calaminus, University of Münster, Germany) in the German Network for Brain Tumor Studies (HIT) of the German Society for Pediatric Oncology and Hematology (GPOH).
3. analyze the existing data sets on QoL and first check the existing data sets for plausibility
4. define the parameters which should be included in a multivariate analysis on factors that influence changes in QoL of patients with childhood craniopharyngioma.
5. design a short tool (questionnaire) for assessment of (psycho) social status in patients with childhood craniopharyngioma
6. do a test on the feasibility of the newly designed tool (questionnaire).
7. mailing of the questionnaire to 400 patients and their siblings as “normal controls”.
8. data analysis based on returned questionnaires.
9. assess differences in terms of (psycho)social status of pts when compared with their siblings.
10. perform multivariate analysis and identify independent risk factors for impaired QoL and/or impaired (psycho) social status in patients with childhood craniopharyngioma during follow-up.
11. define risk profiles and defined cohorts at risk for reduced QoL/(psycho)social status.
12. discuss possible recommendations for treatment strategies in patients at risk based on the results of the project.
13. summarize the findings in a report.

The project will be conducted in the personal and scientific context of the study team of KRANIOPHARYNGEOM 2000 (study assistant: Mrs. U. Gebhardt, PhD; documentarist: Mrs. S. Schröder; Study Nurse: Mrs. G. Danier, PhD; coordinator: Prof. Dr. H. Müller). Biostatistical support is provided by IMBEI, University of Mainz (Prof. Dr. A. Faldum; Mrs. A. Zwiener). The evaluation of QoL assessments (PEDQOL) will be supported by the HIT-Leben task force (Dr. G. Calaminus; Mrs. Teske, Dipl. Psych. A. Wiener).

Free meals and lodging at the Klinikum Oldenburg will be provided for the time of the project.

We suggest that applicants interested in the project first contact the study team KRANIOPHA-RYNGEOM 2000 (e-mail:; tel.: 0049-441-4032072) before official application for the project.
1.Müller HL. Childhood Craniopharyngioma – Recent advances in diagnosis, treatment and follow-up. 2008, Horm Res, 69(4):193-202
2.Roth CL, Hunneman DH, Gebhardt U, Stoffel-Wagner B, Reinehr T, Müller HL. Reduced sympathetic metabolites in urine of obese patients with craniopharyngioma. 2007. Pediatr Res. 61(4):496-501
3.Müller HL, Gebhardt U, Pohl F, Flentje M, Emser A, Warmuth-Metz M, Kolb R, Calaminus G, Sörensen N. Relapse patterns after complete resection and early progression after incomplete resection of childhood craniopharyngioma. 2006 Klin Pädiatr, 218: 315-321
4.Müller HL, Gebhardt U, Faldum A, Emser A, Etavard-Gorris N, Kolb R, Sörensen N. Functional capacity and body mass index in patients with sellar masses – Cross-sectional study on 403 patients diagnosed during childhood and adolescence. 2005 Childs Nerv Syst, 21: 539-545
5.Müller HL, Bruhnken G, Emser A, Faldum A, Etavard-Gorris N, Gebhardt U, Kolb R, Sörensen N. Longitudinal study on quality of life in 102 survivors of childhood craniopharyngioma. 2005 Childs Nerv Syst, 21: 975-980
6.Müller HL, Emser A, Faldum A, Bruhnken G, Etavard-Gorris N, Gebhardt U, Oeverink R, Kolb R, Sörensen N. Longitudinal study on growth and body mass index before and after diagnosis of childhood craniopharyngioma. 2004 J Clin Endocrinol Metab 89: 3298-3305
7.Harz KJ, Müller HL, Waldeck E, Pudel V, Roth C. Obesity in patients with craniopharyngioma: Assessment of physical activity and food intake. 2003. J Clin Endocrinol Metab 88:5227–5231
8.Müller HL, Handwerker G, Wollny B, Faldum A, Sörensen N. Melatonin secretion and increased daytime sleepiness in childhood craniopharyngioma patients. 2002. J Clin Endocrinol Metab 87:3993-3996
Internet sources of information:; (study protocol); ;;
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