Outpatient clinics for adults with congenital heart disease: increasing workload and evolving patterns of referral

Abstract

Objective-To examine the evolving role of specialised outpatient services for adult patients with congenital heart disease. Results-In all, 570 patients were seen at the clinic during these three periods. There was a 44% and a 269% increase in workload between 1987 to 1992 and 1992 to 1997, respectively. There was a steady fall in mean age of patients seen at the clinic with time (38.5, 33.6, and 31.7 years in 1987, 1992, and 1997, respectively, p < 0.001). New referrals from community cardiologists and family physicians increased more in relative terms than did referrals from the Hospital for Sick Children, Toronto (6.7%, 15%, and 37.5%, p = 0.02). There was a steady increase in patients with previous reparative surgery (48.9%, 59.2%, and 69.2%, p < 0.002). The proportion of patients with previous reoperations also increased (2.3%, 10%, and 9.2%, p < 0.01). Echocardiography remained the predominant method of diagnosis. The diagnostic mix did not change with time. Conclusions-Over the past 10 years there has been a large increase in adults with congenital heart disease requiring and seeking specialised care in a tertiary health centre, with a concomitant evolution of referral patterns. These data may be helpful in planning of similar paediatric and adult cardiac services for this expanding population.

Listing and Transplanting Adults With Congenital Heart Disease

“…2,3 Adult patients with CHD, especially those with complex single-ventricle repairs, provide significant and increasingly frequent challenges to medical care providers. 4,5 …”

National Practice Patterns for Management of Adult Congenital Heart Disease

“…1-4,6 -11 Many large academic centers have established so-called adult congenital centers, which offer comprehensive care by cardiologists and surgeons who are familiar with the pathology, anatomy, and social issues facing GUCH patients. [1][2][3][4]10,11 Underlying this initiative to regionalize care is the belief, as pointed out by Webb,4 that surgeons who operate on adult congenital patients should have specialization as congenital heart surgeons as opposed to adult cardiac surgeons without further specialization in congenital heart disease. This belief is predicated on the unproven hypothesis that trained congenital heart surgeons have specialized technical expertise coupled with a greater understanding of the prerepair and postrepair anatomy and physiology that define GUCH patients.…”

Lead Extraction in Congenital Heart Disease Patients – Indications, Technique and Experience

“…Sinus node dysfunction and atrial arrhythmias are often encountered in atrial switch patients and can be addressed with device implantation and/or catheter ablation (23). Ventricular arrhythmias and risk of sudden death have been addressed with ICD implantation in palliated TGA patients and have been associated with compromised systemic RV function (8).…”

“…The prevalence of arrhythmias and conduction disorders in adults with surgically treated CHD as well as those with specific congenital defects associated with conduction system abnormalities has led to an increasing need for implantable devices (both pacemakers and ICDs) in these patients (5). Unfortunately, as the indications for device implantation in patients with CHD have increased, so have the rate of device related infections and other complications leading to a growth in referrals for lead extraction in this expanding patient population (6)(7)(8). A thorough understanding of the role that lead extraction plays in this growing subgroup of patients is therefore critical for any implanting and extracting practitioner.…”