Aortic coarctation repair--lost and found: the role of local long term specialised care.

Abstract Background Aortic coarctation is associated with significant abnormalities of the underlying vasculature. Surgical repair, although relieving obstruction, is not a cure; patients continue to have a high risk of complications with a significantly reduced life expectancy. It has become increasingly apparent that they require regular specialised follow up lifelong. However provision of such services is limited particularly for patients living some distance from the largest cities where specialised adult congenital heart disease services tend to based. We carried out a notes-based study to look at the adequacy of long term follow up in such patients and to assess the role of a local specialist cardiology service in managing these patients. Methods We carried out a notes-based study of 55 patients with aortic coarctation referred to a new specialist grown up congenital heart disease clinic based in a large district general hospital over 100 miles from the nearest surgical centre specialising in adult congenital heart disease. Results A significant proportion of the patients in this study had already suffered major complications by the time of referral. Despite this, nearly half had, at some stage, been lost to follow up and a third had been referred from the community with new complications. 52% of the women had produced children often with little cardiological support. Few patients had had any specialised imaging. At initial review in the clinic, 41% had significant hypertension, although only a small proportion were on antihypertensives. Following initial review in the specialist GUCH clinic, new medications were initiated in 55%, mostly for hypertension; aortic imaging was performed in 94%; and 22% were referred for further specialist investigation or invasive treatment. Conclusions This study demonstrates that many patients with previous repair of aortic coarctation have not received optimal long term care. Many had been lost to regular cardiology follow up and, even amongst those who had been seen in cardiology clinics, there was a high frequency of poorly treated or unsuspected complications. The provision of local expert care from a cardiologist specialising in congenital heart disease allows earlier and more aggressive treatment of complications and may also improve compliance. Where a localised specialist is not available, general cardiologists need to work to protocol-driven care pathways with easy access to specialist support.