Endocrine Abstracts

Background: Venous thromboembolism(VTE) is a well-known perioperative complication in patients with Cushing’s syndrome(CS) and may be preventable. A recent report highlighted that thromboprophylaxis management in patients with CS still varies considerably across Endo-ERN reference centers but the actual incidence of VTE and its management in individual patients is unclear.

Aim: To collect epidemiological and clinical data of new cases of CS reported on the European Registries for Rare Endocrine Conditions(EuRRECa) electronic reporting tool(e-REC) and Endo-ERN.

Methods: A survey was conducted for new patients with CS reported by e-REC by reference centers within Endo-ERN in the last 2 years. A total of 180 patients were reported with CS and the survey was completed by 26 clinicians in 11 centres in 6 countries. Risk factors, VTE occurrence, and thromboprophylaxis regimens were analysed.

Results: One hundred and thirteen patients had Cushing disease (62.8%), 59 CS (32.3%) and 8 patients ectopic CS (4.4%). 136 (75.6%) were female with a mean age of 45±16.2 years (range 3-80). Overweight (BMI 25-30 kg/m²) and obesity (BMI ≥30 kg/m²) were common findings with 78 (43.3%) and 61 (33.9%) patients respectively. 121 had hypertension (67.2%), 38 had diabetes mellitus (21.1%). 11 patients reported VTE(6.1%) prior to CS diagnosis. Medical treatment of CS consisted of metyrapone (n=50, 27.8%), ketoconazole (n=16, 8.9%), osilodrostat (n=3;1.7%), and mitotane (n=1, 0.56%). One hundred and twelve patients (64.4%) did not receive cortisol lowering treatment before surgery. CS was completely controlled in 35 patients (19.4%) and partially in 31 (17.2%) before surgery. Most patients were operated (n=167, 92.8%), first surgery in 76.6% of patients. 136 patients received thromboprophylaxis before surgery, mostly using Low-molecular weight-heparins (94.2%). In 42 cases, thromboprophylaxis was started the day of surgery (30.4%), in 51 stopped within one week after surgery (36.9%). VTE was reported in only 4 cases (2.2%), all of them in uncontrolled CS. Of these, 3 VTE’s occurred months before surgery, in patients with history of VTE and high VTE risk, 2 of them developing VTE while on anticoagulant treatment for previous VTE. Only 1 VTE occurred after surgery(6 weeks) in a patient who received thromboprophylaxis the first week after surgery. No severe bleeds were observed during thromboprophylaxis.

Conclusion: The results of this survey suggest a heterogenous policy on pre-surgery cortisol lowering treatment and thromboprophylaxis. In this survey VTE’s were only observed in subjects without cortisol lowering therapy and with additional VTE risks. In addition, we observed no major bleeds in patients on thromboprophylaxis. Therefore this survey paves the way for the standardization of thromboprophylaxis regimens in subjects with CS.