Implementation of a multidisciplinary nurse-led aortopathy clinic to streamline and optimize the surveillance and management of patients with thoracic aortic aneurysm

Introduction

Thoracic aortic disease is a high-risk condition requiring coordinated specialist care. Increased cross-sectional imaging has led to rising diagnosis of this often silent disease. Optimal blood pressure control, patient education, timely imaging, and access to elective surgery are essential to improve outcomes.

Purpose

To establish a nurse-led aortopathy clinic delivering comprehensive care from initial presentation through surveillance, multidisciplinary decision-making, surgical work-up, optimized blood pressure and imaging management, and post-operative follow-up.

Methods

In 2019, a nurse-led aortopathy clinic was established after a loss-to-follow-up event in conventional outpatient care. It provides a one-stop service for patients with dilated thoracic aorta across Sussex, UK (population 915,000), offering structured triage, pre- and post-operative surveillance, mainstreamed genetic testing, MDT review, surgical coordination, and patient education.

The clinic runs weekly face-to-face and telephone clinics and fortnightly MDT meetings with radiology, cardiology, cardiac and vascular surgery, and specialist nurses, ensuring clear communication on treatment decisions, medications, imaging, and familial screening.

Active surveillance follows a standardized SOP with CT/MRI imaging, echocardiography when indicated, tight blood pressure control, lifestyle advice, and access to genetic and pre-pregnancy counselling. Nurses are accredited to independently request imaging, extended in 2025 to whole-aorta MRI for inherited aortopathy (IHA). The SOP defines referral criteria, clinic scope, management pathways, and imaging intervals for sporadic and inherited aortopathy.

Results

Patient volume increased from 262 in 2021 to 942 in 2024, reaching 1,234 by January 2026 (Figure 1), with an average of 80 patients (7%) reviewed monthly. Surveillance has been centralised within the clinic, reducing routine follow-up in cardiology and cardiac surgery clinics and improving referral capacity. No patients have been lost to follow-up.

Overall, 217 patients (18%) underwent predominantly elective surgery, including five re-operations. Procedures included ascending aorta replacement (33%), root replacement (28%), hemiarch replacement (12%), valve-sparing aortic root replacement (8.8%), and total arch replacement (5.5%), including 1.8% Frozen Elephant Trunk procedures. Complex surgery (≥3 concomitant interventions) accounted for 11%. No patient experienced an acute aortic syndrome while under surveillance.

Genetic testing was undertaken in 97 patients (8%), with 17 positive results (1.4%). A dedicated Turner syndrome registry was established (n=37).

Conclusions

A fully integrated nurse-led aortopathy clinic, supported by standardized protocols and a dedicated MDT, delivers safe and efficient care at scale, aligns with national guidance, and supports future service expansion.Figure 1For image description, please refer to the figure legend and surrounding text.