Referral to Definitive Surgical Treatment in Cushing's Syndrome – An Odyssey That Requires Attention

Objective Cushing's syndrome (CS) requires prompt recognition and referral to explore definitive intervention. Delays can lead to increased mortality and death. This service evaluation aimed to distinguish time from initial referral to definitive surgical management in CS. Context Clinical standards for appropriate timelines for referral are undefined. Design A retrospective service evaluation across five specialised endocrine surgical centres reviewing the timeline from initial referral to definitive surgical treatment. Patients All adult patients diagnosed with CS who underwent definitive surgery between January 2018 and December 2019. Measurements Data were collected on initial referrer, time to first clinical review, tests performed within non‐surgical endocrinology centres, timing of referral to specialised endocrine surgical centre, clinical review (if applicable), multi‐disciplinary meeting and definitive surgery. Results 71 patients received definitive surgical treatment for CS (37 pituitary CS and 34 adrenal CS). Median time from initial primary care referral to a specialised endocrine surgical centre was quicker if referred directly (56 days) than if initially referred to a non‐surgical endocrinology hospital (159 days). The overall median time from all initial referrals to definitive surgical treatment was 211 days for pituitary CS and 253 days for adrenal CS. Patients referred directly to the specialised endocrine surgical centre had surgery in a median of 196 days (187 days and 252 days for pituitary and adrenal CS respectively) compared with 253 days in patients that were referred via a non‐surgical endocrinology centre (249 days and 346 days for pituitary and adrenal CS respectively). Conclusion There were delays from initial referral to definitive surgical treatment of CS. Clearer, clinically focussed pathways and (inter)national standards on early management of Cushing's syndrome should be considered to more address unwarranted delays in treating Cushing's syndrome.