Authors
Felix Schmitt-Hoffner, Johannes Gojo, Monika Mauermann, Katja von Hoff, Martin Sill, Damian Stichel, David Capper, Arnault Tauziede-Espariat, Pascale Varlet, Kenneth Aldape, Zied Abdullaev, Andrew M Donson, Ulrich Schüller, Matija Snuderl, Sebastian Brandner, Maria Łastowska, Joanna Trubicka, Evelina Miele, Jasper van der Lugt, Jens Bunt, Christof Kramm, Michal Zapotocky, Felix Sahm, Andrey Korshunov, Natalie Jäger, Stefan M Pfister, Marcel Kool
Publication date
2022/6/1
Journal
Neuro-Oncology
Volume
24
Issue
Supplement_1
Pages
i12-i13
Publisher
Oxford University Press
Description
Craniopharyngiomas are rare, histologically benign, sellar/parasellar tumors with significant tumor and therapy related morbidity and impairment in quality of life (QOL). We report survey results from patients/families affected by childhood-onset craniopharyngioma to identify opportunities for improvement in management. An anonymous REDCap survey was distributed via social media and clinic visits to patients/families of craniopharyngioma survivors. Survey questions investigated perspectives on clinical management and functional and survival outcomes at initial diagnosis and recurrence. A total of 159 patients/families completed the survey, 40% (n=64) reported craniopharyngioma recurrence. For primary craniopharyngioma, maximal safe resection was the most frequent treatment reported (n=84), followed by partial resection (n=40), radiation (n=8), biopsy (n=5), and chemotherapy (n=3). Most patients (n …
Total citations
20242
Scholar articles
F Schmitt-Hoffner, J Gojo, M Mauermann, K von Hoff… - Neuro-Oncology, 2022