Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease

Background: 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). Ou...

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Main Authors: S. Haider, K. Krishanthasan, I. Olakorede, A. Constantine, I. Rafiq, K. Dimopoulos
Format: Article
Language:English
Published: Elsevier 2024-12-01
Series:International Journal of Cardiology Congenital Heart Disease
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Online Access:http://www.sciencedirect.com/science/article/pii/S2666668524000570
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author S. Haider
K. Krishanthasan
I. Olakorede
A. Constantine
I. Rafiq
K. Dimopoulos
author_facet S. Haider
K. Krishanthasan
I. Olakorede
A. Constantine
I. Rafiq
K. Dimopoulos
author_sort S. Haider
collection DOAJ
description Background: 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. Methods: 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. Results: 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. Conclusions: 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.
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spelling doaj-art-36f8a0b2d66642ca8f925383759bcce62025-08-20T02:48:39ZengElsevierInternational Journal of Cardiology Congenital Heart Disease2666-66852024-12-011810054810.1016/j.ijcchd.2024.100548Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart diseaseS. Haider0K. Krishanthasan1I. Olakorede2A. Constantine3I. Rafiq4K. Dimopoulos5Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UK; Corresponding author. Department of Adult Congenital Heart Disease, Royal Brompton Hospital, Sydney St, London SW3 6NP, UK.Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UKDepartment of Clinical Neurosciences, University of Cambridge, Cambridge, UKAdult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UKAdult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UKAdult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton Hospital, London, UKBackground: 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. Methods: 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. Results: 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. Conclusions: 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.http://www.sciencedirect.com/science/article/pii/S2666668524000570Adult congenital heart diseaseEndocarditisAwarenessLearning disabilities
spellingShingle S. Haider
K. Krishanthasan
I. Olakorede
A. Constantine
I. Rafiq
K. Dimopoulos
Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease
International Journal of Cardiology Congenital Heart Disease
Adult congenital heart disease
Endocarditis
Awareness
Learning disabilities
title Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease
title_full Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease
title_fullStr Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease
title_full_unstemmed Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease
title_short Infective endocarditis: Awareness, knowledge gaps and behaviours amongst adults with congenital heart disease
title_sort infective endocarditis awareness knowledge gaps and behaviours amongst adults with congenital heart disease
topic Adult congenital heart disease
Endocarditis
Awareness
Learning disabilities
url http://www.sciencedirect.com/science/article/pii/S2666668524000570
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