22 Reducing burden of ambulatory care in adult congenital heart disease to improve health outcomes – a cohort study

Abstract

Introduction Adults with congenital heart disease (ACHD) are a growing, heterogeneous group requiring lifelong follow-up to detect occurrence of known complications. In contrast to other cardiovascular disorders and chronic conditions, those with ACHD generally remain within the specialist tertiary hospital setting throughout their lives. The costs and burden on the patient of outpatient healthcare are increasingly recognised in the wider healthcare setting. The primary aim of this study was to evaluate present ambulatory healthcare in ACHD for ability to detect clinically relevant problems and consider patient and service provider costs. An additional aim was to define levels of non-attendance. We also summarise clinic activities during the COVID-19 pandemic when a hybrid approach of virtual and face to face consultations were arranged according to clinician perceived priority.Methods The clinic attendances of 100 patients attending the general ACHD clinic, selected by hospital number to minimise bias, were reviewed over a five-year period (1/01/2014-30/11/2019) and the Covid 19 period (23/03/2020-23/07/2021) by interrogation of the electronic patient record. This period represented 1/6 of their total lifetime clinic attendance. Results100 patients (Table 1) were invited to clinic annually. Non-attendance was 10% with 15 patients recurrently non-attending. 80% (459/ 575) of appointments resulted in no decision other than continued review (Figure 1). Electrocardiograms and echocardiograms were performed frequently but new findings were rare (5.1% and 4.0%). Other investigations required separate attendance. Decision-making was more common with higher ACHD AP class and new symptoms. There were 25 elective admissions, and 40 emergency admissions over half following appointments where no notable findings were recorded (Figure 2). Distance travelled to the ACHD clinic, which was supported by six clinical staff, was 14.9km (range 1.6-265) resulting in an estimated 433-564 workdays lost. During Covid 19, 56% appointments were in-person;41% telephone;5% video. Decisions were made at 37% in-person and 19% virtual consultations. Non-attendance was 3.9% and there were 8 emergency admissions. Conclusion The primary purpose of ACHD ambulatory care is surveillance. Despite this, emergency hospital admissions exceed elective hospital admissions. There is a high burden of care for patient and healthcare provider with the traditional outpatient model. The Covid-19 pandemic necessitated provision of ambulatory care in a different way and should encourage development of a new more patient-centred approach to ambulatory care delivery in ACHD.