Haider S, Krishanthasan K, Olakorede I, Constantine A, Rafiq I, Dimopoulos K
Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UK.
Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.
Int J Cardiol Congenit Heart Dis. 2024 Oct 18;18:100548. doi: 10.1016/j.ijcchd.2024.100548. eCollection 2024 Dec.
Adults with congenital heart disease (ACHD) have an increased risk of infective endocarditis (IE), associated with significant morbidity and mortality. This risk is compounded by patient-related factors, including lack of awareness of IE and the presence of a learning disability (LD). Our study sought to evaluate patients' understanding of the risks and symptoms of IE and to identify patients who could benefit from targeted education.
Patients attending the outpatient department of a tertiary ACHD referral centre completed a questionnaire that assessed their knowledge, attitudes and behaviours towards IE. Baseline demographics and clinical data were collected from electronic patient records.
A total of 132 ACHD patients completed the questionnaires (age 41.7 ± 16.4 years, 50 % male, 11 % with an LD). Only 37.1 % of patients accurately defined IE, none of whom had an LD. Most patients chose pyrexia (47 %) and tiredness (39.4 %) as potential symptoms of IE, however, none correctly identified all symptoms. Only 19.7 % were aware of the requirement for prolonged antibiotic treatment for IE. A third of all patients reported that they would have made lifestyle changes had they been aware of the complications of IE. There was a statistically significant association between learning disability and poor level of awareness in the questionnaire.
Our study demonstrates awareness issues regarding IE among ACHD patients, highlighting the need to invest further on patient education. This should start at the time of transition from paediatric to adult services and continue lifelong, with emphasis on patients with a learning disability.
患有先天性心脏病的成年人（ACHD）发生感染性心内膜炎（IE）的风险增加，这与显著的发病率和死亡率相关。患者相关因素会加剧这种风险，包括对IE缺乏认识以及存在学习障碍（LD）。我们的研究旨在评估患者对IE风险和症状的理解，并确定能从针对性教育中获益的患者。
在一家三级ACHD转诊中心门诊部就诊的患者完成了一份问卷，该问卷评估了他们对IE的知识、态度和行为。从电子病历中收集基线人口统计学和临床数据。
共有132名ACHD患者完成了问卷（年龄41.7±16.4岁，50%为男性，11%有学习障碍）。只有37.1%的患者准确界定了IE，其中没有学习障碍患者。大多数患者选择发热（47%）和疲倦（39.4%）作为IE的潜在症状，然而，没有人正确识别出所有症状。只有19.7%的人知道IE需要长期抗生素治疗。三分之一的患者报告说，如果他们知道IE的并发症，就会改变生活方式。在问卷中，学习障碍与认知水平低之间存在统计学上的显著关联。
我们的研究表明ACHD患者对IE存在认知问题，凸显了进一步投入患者教育的必要性。这应从从儿科服务过渡到成人服务时开始，并持续终身，重点是有学习障碍的患者。
