The introduction of a dedicated cardiology clinic including a clinical scientist led pathway for women with turner's syndrome

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Abstract Background There are more than 15,000 women living with Turner’s Syndrome (TS) in the UK, over 700 of whom are cared for within our linked Endocrinology services. Mortality is predominantly related to cardiovascular disease therefore close cardiology review with a focus on aortopathy is essential (1). However appropriate surveillance is challenging with growing pressures on all aortopathy services across the United Kingdom. Purpose To audit our current practise according to current international guidelines (2) and seek methods to improve the pathway for our growing population of TS patients including the feasibility of a Clinical Scientist led clinic, aiming to improve capacity and efficiency of our service. Methods A quality improvement project was conducted over a three-year period, piloting a dedicated clinical scientist-led clinic under close Cardiology Consultant supervision. Patients selected were deemed lower risk for cardiovascular complications according to American Heart Association (AHA) recommendations (2) (figure 1). Follow-up intervals of patients under both consultant-led and clinical scientist led pathways were analysed. Results Among a total of 226 patients analysed, 103 (46%) fell into the lowest risk category and therefore deemed suitable for prospective Clinical Scientist led pathway (figure 2). Analysis of all patients demonstrated that 60% had appropriate follow-up intervals according to guidelines, while 37% were too short and 3% were too long. A five-year projection indicated a consequential 96 unnecessary additional appointments for patients that were being seen too frequently. Further analysis showed that the time frame for follow up was too short in 25% of patients seen in the clinical scientist led clinic compared to 41% in the Consultant-led clinic. There were no aortic dissections in patients under surveillance during this period. In the last 10 years 1 patient on the waiting list for surgery (having presented with a type B dissection but requiring workup for liver cirrhosis) had a retrograde type A dissection (indexed aortic root dimension 2.4cm/m²). No other adverse events were recorded. Conclusion Auditing our service revealed safe management and improved adherence to guidelines in the clinical scientist-led clinic, identifying opportunities to optimize follow-up and enable physicians to focus upon high-risk patients. This pilot demonstrates the feasibility of a clinical scientist-led clinic in managing low risk TS patients, suggesting scalability to other conditions involving aortopathy to address capacity issues and improve pathways.