OBJECTIVES: Carcinoid syndrome (CS) is characterized by a spectrum of symptoms secondary to gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including flushing and diarrhea. Many patients with CS experience uncontrolled symptoms despite treatment with somatostatin analogs (SSAs). There is a lack of treatment pattern data and consensus around treatment approaches. As authorities are increasingly requiring high-quality real-world evidence to inform decision-making, we conducted a nationwide registry study to gain knowledge of clinical practice, and quantify healthcare resource use (HRU) and costs in uncontrolled CS.

METHODS: Data were collected from Swedish healthcare registers from July 2005–December 2013. Swedish data were chosen for their exhaustiveness, comprehensiveness, and precision of linkage between registers. HRU (surgeries, medical interventions, examinations, imaging, outpatient visits, hospitalizations, CS-related drugs) was collected and costed in euros (2015 rate), comparing the 8 months before/after patients became uncontrolled in their CS.

RESULTS: CONCLUSIONS: Though the study was conducted retrospectively in a small sample as a result of the rarity of the disease, the data nevertheless showed greater cost of uncontrolled CS in comparison to controlled CS. The debilitating effects of CS on patients’ quality of life and the expense of the current armamentarium could lead to increased HRU and costs.