Epidemiology of hypothalamic obesity in craniopharyngioma and other rare sellar and suprasellar tumors

Julian Witte; Bastian Surmann; Manuel Batram; Markus Weinert; Mathias Flume; Nicolas Touchot; Julia Beckhaus; Carsten Friedrich; Hermann Muller

doi:10.1530/endoabs.99.P526

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Endocrine Abstracts (2024) 99 P526 | DOI: 10.1530/endoabs.99.P526

ECE2024 Poster Presentations Pituitary and Neuroendocrinology (120 abstracts)

Epidemiology of hypothalamic obesity in craniopharyngioma and other rare sellar and suprasellar tumors

Julian Witte ¹ , Bastian Surmann ¹ , Manuel Batram ¹ , Markus Weinert ¹ , Mathias Flume ² , Nicolas Touchot ³ , Julia Beckhaus ^4,5 , Carsten Friedrich ⁴ & Hermann Müller ⁴

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Author affiliations

¹Vandage GmbH, Bielefeld, Germany; ²Gene Access GmbH, Dortmund, Germany; ³Rhythm Pharmaceuticals, Boston MA, United States; ⁴University Children’s Hospital, Carl von Ossietzky University Oldenburg, Klinikum Oldenburg AöR, Department of Pediatrics and Pediatric Hematology / Oncology, Oldenburg, Germany; ⁵Carl von Ossietzky University Oldenburg, Division of Epidemiology and Biometry, Oldenburg, Germany

Background: Hypothalamic obesity (HO) is defined as abnormal weight gain resulting in severe persistent obesity due to physical, tumor- and/or treatment related damage of the hypothalamus. The HO epidemiology is poorly understood. We developed a database algorithm supporting the standardized identification of tumor/treatment-related HO (TTR-HO) patients.

Methods: The algorithm is used to estimate incidence rates of TTR-HO patients in the German healthcare context from a representative claims database (n=5.42 million) covering 2010-2020. Patients were identified based on surgery/radiotherapy procedures and HO-associated tumor diagnoses (n=3,976). TTR-HO was defined by incident obesity and validated based on incident diabetes insipidus diagnosis and desmopressin prescription within a twelve-month period after surgery/radiotherapy. Uncertainty due to algorithm definitions is explored in sensitivity analyses.

Results: Estimated annual incidence of TTR-HO in Germany is between 0.7 and 1.7 cases per 1,000,000 persons (2019 prevalence: n=1,262 patients). With observed cases in all age groups, two HO-incidence peaks are identified: children/young adults aged 10-14 years and adults aged 40-44 years. Most frequent HO-validated tumor diagnoses are benign sellar/suprasellar tumors (6.1/1,000,000 persons over nine-years), including tumors of the craniopharyngeal duct (3.1/1,000,000), neoplasms of the pituitary gland (4.1/1,000,000), and nonspecific brain tumors of endocrine glands (2.4/1,000,000).

Conclusion: This is the first real-world database analysis of TTR-HO epidemiology, refining current estimates of HO-epidemiology and early patient identification. A more comprehensive characterization of HO patients, along with a better understanding of its clinical implications, will be crucial in developing optimal treatment strategies to improve patient outcomes.