OBJECTIVES: Hypothalamic obesity (HO) is defined as abnormal weight gain resulting in severe persistent obesity due to physical damage of the hypothalamus. It poses substantial burden to patients, relatives and health systems. Yet, data on the economics of HO are lacking.

METHODS: We developed an algorithm for the standardized identification of tumor-related HO patients in the German healthcare system and analyzed patient pathways, healthcare resource utilization (HCRU), and costs using a retrospective claims database-matched cohort study (n=5.24Million) covering 2010-2021. We included patients with a prior HO-associated tumor diagnosis (n=37), compared them with matched non-HO-obesity patients and reported HO diagnosis validations (incident obesity and diabetes insipidus diagnosis and desmopressin prescription within the quarter of surgery/radiotherapy or the following four quarters). Excess HCRU and costs were calculated for eight quarters following the initial HO-associated hospitalization with surgery/radiotherapy.

RESULTS: 40% of validated HO patients received the diagnosis during the index hospitalization or follow-up, while 34% were diagnosed at an outpatient GP visit. HO patients had higher costs (€24,800) during the index quarter of tumor surgery/radiotherapy compared to non-HO-obesity patients. Excess costs remained high in the first year (+€19,900) and halved in the second year (+€10,700). Inpatient treatment costs were the main drivers, with outpatient physician and medication costs increasing gradually. In the first year after index event, HO patients had an average of 4.6 hospitalizations more than non-HO-obesity patients (+2.8 hospitalizations in the second year). Within two quarters after the index event, HO patients had an average of 4 more outpatient physician visits. In subsequent quarters, excess utilization gradually declined to +2 contacts per quarter but remained significantly higher.

CONCLUSIONS: To our knowledge, this is the first claims database analysis of tumor-related HO patient pathways and economics, indicating a substantial economic burden of HO, that needs to be further analyzed.