Abstract
Background
Adults with congenital heart disease (ACHD) have an increased risk of infective endocarditis (IE), which is associated with significant morbidity and mortality. This risk is further compounded by patient-related factors such as education and awareness of IE. The onus of patient education falls on both patient and physician, and is paramount to successful outcomes. Our study sought to evaluate patients' understanding of the risks, preventative measures and symptoms of IE, and to identify high-risk ACHD patients who would benefit from targeted education.
Methods
A cross-sectional study was conducted using a pre-tested questionnaire to assess knowledge of and attitudes towards IE. Patients attending the outpatient department of a tertiary referral centre completed the questionnaires independently. Baseline demographics and clinical data were collected from electronic patient records.
Results
132 questionnaires were completed (median age 38 years, 50% male). 106 patients (80%) had previous surgical or percutaneous interventions and 7 patients (5%) had suffered with infective endocarditis in the past. 37% were able to accurately define IE. Out of a range of symptoms, most patients chose temperature (47%) and tiredness (39%) as classical symptoms of IE, however none correctly identified all listed symptoms as potential signs of IE. The majority of patients knew tooth abscess (58%) and body piercings (50%) were risk factors for IE. A fifth of patients (20%) were failing to have annual dental check-ups. 22% thought that IE would only require a few days stay as an inpatient and only 20% of patients were aware of the requirement for prolonged antibiotic treatment and the majority (63%) were unaware of the potential need for open heart surgery. 1 in 4 patients could recall having received information regarding IE. A third of patients reported that they would have made lifestyle changes had they known that IE required prolonged intravenous antibiotic treatment and could result in open heart surgery and death.
Discussion
Our study highlights key issues in the management of ACHD. Moving forward with the continuously growing population of patients we need to focus on the multi-disciplinary approach including specialist clinical nurses and increasing awareness online and through meetings and patient days as well as the importance of transition services as paediatric patients move across to adult specialists. General physcians will also encounter ACHD, therefore it is important to ensure awareness is widespread in the form online platforms and leaflets. We must also acknowledge the impact of guidelines and ensure there is still a significant focus on IE within them. To conclude, despite the significant morbidity and mortality associated with IE in ACHD, patient awareness of symptoms, risk factors and consequences is limited. Promotion of IE awareness is a cost-effective intervention, which can reduce the incidence and complications of IE.