Can highly specialised Fontan clinics improve patient-reported knowledge and perceptions? A cross-site study

Abstract

Background/Aims The number of adult patients with a Fontan circulation is increasing, with high morbidity and mortality continuing to be prevalent. The complications that can arise within this sub population are unique and challenging. People with a Fontan circulation require personalised and detailed care to ensure they are educated about their condition, understand the importance of lifelong follow up and compliance and empower them to take responsibility for their general health to improve long-term outcomes. This study aimed to evaluate whether patients' level of knowledge and understanding of issues related to their condition and how they felt about their care improved after appointments in a specialised Fontan clinic with a dedicated clinical nurse specialist. Methods A total of 61 patients across two specialised Fontan clinics were given a pre-and post-clinic survey, including questions focused on their knowledge and perception of their condition, its long-term management and how it impacts their lifestyle. The survey ran over a period of 3months (January–March) in 2022 and was conducted either on paper or via an online link, depending on which site they were seen at. Results Most patients reported improved understanding of key areas related to their condition after being seen at the specialised Fontan clinics, including the need for medications, exercise, family planning and endocarditis. Following clinic appointments, more patients felt they were well cared for by the clinical team and treated as an individual. Conclusions Specialised clinics with the support of clinical nurse specialists can empower patients to make informed healthcare choices and improve their reported knowledge and understanding of their condition.