Ambulatory Care in Adult Congenital Heart Disease—Time for Change?

Abstract

Background: The adult congenital heart disease (ACHD) population is growing in size and complexity. This study evaluates whether present ambulatory care adequately detects problems and considers costs. Methods: A UK single-centre study of clinic attendances amongst 100 ACHD patients (40.4 years, median ACHD AP class 2B) between 2014 and 2019 and the COVID-19 restrictions period (March 2020–July 2021). Results: Between 2014 and 2019, there were 575 appointments. Nonattendance was 10%; 15 patients recurrently nonattended. Eighty percent of appointments resulted in no decision other than continued review. Electrocardiograms and echocardiograms were frequent, but new findings were rare (5.1%, 4.0%). Decision-making was more common with the higher ACHD AP class and symptoms. Emergency admissions (n = 40) exceeded elective (n = 25), with over half following unremarkable clinic appointments. Distance travelled to the ACHD clinic was 14.9 km (1.6–265), resulting in 433–564 workdays lost. During COVID 19, there were 127 appointments (56% in-person, 41% telephone and 5% video). Decisions were made at 37% in-person and 19% virtual consultations. Nonattendance was 3.9%; there were eight emergency admissions. Conclusion: The main purpose of the ACHD clinic is surveillance. Presently, the clinic does not sufficiently predict or prevent emergency hospital admissions and is costly to patient and provider. COVID-19 has enforced different methods for delivering care that require further evaluation.

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

“…Hospital related factors such as a high number of patients at outpatient clinics, but no medical staffing resources or patient-related features (such as gender or disease complexity) were linked with continuity in care [ 34 ]. In a single ACHD centre survey carried out in the UK, nonattendance in all ACHD patients was 10% [ 35 ]. Even when considering a single defect of moderate complexity such as Tetralogy of Fallot in the UK, 24% of living patients appeared not to be followed-up in specialist centres, although a few of them were having follow-up in general cardiology clinics.…”

Outpatient care of adults with congenital heart disease in the UK: a qualitative appraisal of the clinician perspective

“… 3 Delivery of ACHD surveillance via the traditional outpatient clinic model generates a high care burden for both patient and provider, particularly as expertise is limited to a small number of specialist centres. This current model of care delivery is not outcome driven, 4 although outcomes that matter and are relevant to contemporary ACHD populations are starting to be defined. 5 This study explores clinicians’ perspectives of ambulatory care in ACHD.…”