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

Abstract

Objective This study aimed to explore clinicians’ perspectives of ambulatory care in adult congenital heart disease (ACHD).Methods Semistructured 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.Results 21 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.Conclusions The 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.