Hypothalamic obesity: Epidemiology in rare sellar/suprasellar tumors—A German claims database analysis

• Published in: Journal of neuroendocrinology Vol. 36; no. 12; pp. e13439 - n/a
• Main Authors: Witte, Julian, Surmann, Bastian, Batram, Manuel, Weinert, Markus, Flume, Mathias, Touchot, Nicolas, Beckhaus, Julia, Friedrich, Carsten, Müller, Hermann L.
• Format: Journal Article
• Language: English
• Published: United States Wiley Subscription Services, Inc 01.12.2024; John Wiley and Sons Inc
• Subjects: Adolescent; Adult; Aged; Algorithms; Brain cancer; Brain tumors; Child; Child, Preschool; craniopharyngioma; Databases, Factual; Desmopressin; Diabetes insipidus; Endocrine glands; endocrinology; Epidemiology; Female; Fundamental and Mechanistic Neuroendocrinology; Germany - epidemiology; Humans; Hypothalamic Diseases - epidemiology; hypothalamic obesity; Hypothalamus; Incidence; Male; Middle Aged; Obesity; Obesity - epidemiology; Original; Patients; Pituitary; Pituitary Neoplasms - epidemiology; Radiation therapy; rare sellar/suprasellar tumors; Sensitivity analysis; Surgery; tumor/treatment related HO; Tumors; Young Adult; Young adults; Germany; rare sellar/suprasellar tumors; tumor/treatment related HO; hypothalamic obesity; craniopharyngioma; endocrinology
• ISSN: 0953-8194; 1365-2826; 1365-2826
• DOI: 10.1111/jne.13439

Hypothalamic obesity (HO) is defined as abnormal weight gain resulting in severe persistent obesity due to physical, tumor‐ and/or treatment‐related damage to the hypothalamus. HO epidemiology is poorly understood. We developed a database algorithm supporting the standardized identification of tumor/treatment‐related HO (TTR‐HO) patients. 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 = 3976). HO was defined by incident obesity and validated based on incident diabetes insipidus diagnoses and desmopressin prescription within a 12‐month period after surgery/radiotherapy. Uncertainty due to algorithm definitions is explored in sensitivity analyses. Estimated annual incidence of TTR‐HO in Germany is between 0.7 and 1.7 cases per 1,000,000 persons (2019 prevalence: n = 1262 patients). With observed cases in all age groups, two HO‐incidence peaks are identified: children/young adults aged 10–24 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 9 years), including tumors of the craniopharyngeal duct (1.3/1,000,000), neoplasms of the pituitary gland (4.1/1,000,000), and nonspecific brain tumors of endocrine glands (2.4/1,000,000). 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 patients with HO as well as a better understanding of clinical implications will be crucial in developing optimal treatment strategies to improve patient outcomes.