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

Abstract

ObjectiveThis study aimed to explore clinicians’ perspectives of ambulatory care in adult congenital heart disease (ACHD).MethodsSemistructured interviews were carried out remotely (Zoom) with a range of physicians providing ambulatory care to patients with ACHD across the UK. The chronic care model, thrive and candidacy frameworks were used to design prompt guides and subsequently develop themes. A framework approach was used to code and analyse transcripts, which were managed in NVivo.Results21 clinicians (43% females, 38% specialists) from 10/12 ACHD networks in the UK participated. Shared themes included the purpose of the clinic appointment, problems in the ‘hub-and-spoke’ care system, role of the general practitioner and ACHD specialist nurse, communication with patients, burden of ambulatory care and patient self-management. Reflecting on these themes, participants identified resources, what care and how and by it is delivered alongside the role of the patient as key areas for future research.ConclusionsThe present structure of ACHD ambulatory care is neither patient-centred nor equitable. The concerned clinicians raise the question whether increasing resource alone without changing structure will lead to better outcomes for patients.

What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums

“…The majority of our participants were adult patients and much of what they reported supports the view that the current way in which ACHD ambulatory care is delivered in the UK (the hub and spoke approach) 13 does not provide either equitable or patient-centred care. 36 Poor communication and coordination of care also resulted in some people with CHD being lost to follow-up, particularly at times of transition from paediatric to adult services or from one hospital to another or suffering potentially avoidable complications, with consequences for longer-term health outcomes. While these findings are not new, the complexity of this patient cohort and the requirement for lifelong follow-up increase their vulnerability to poorer outcomes and experiences.…”