Infective endocarditis awareness in CHD- much room for improvement

It is well known that patients with congenital heart disease (CHD) are known to be at higher risk for developing infective endocarditis (IE), with a incidence of IE among ACHD was 27–44 times that reported for contemporary adults (1)(2).

Haider et al. have recently published a work about the knowledge of patients with CHD about IE(3). A questionnaire was administered to consecutive patients seen in the outpatient department of a tertiary ACHD centre. This questionnaire was develop through modification of the Leuven Knowledge Questionnaire for Congenital Heart Disease(4) and in which several items were selected: 1) The patient's ability to define infective endocarditis, 2) Awareness of IE symptoms, 3) Knowledge of IE risk factors, 4) Engagement in preventive measures and 5) Knowledge of the treatment and potential consequences of IE. One hundred and thirty-two patients completed de questionnaire.  Up to 72.7% of patients had moderate and 21.2% severe CHD, and 81.1% of patients had underdone at least one previous surgical or percutaneous intervention. Just 5.3% had previously had infective endocarditis. As a limitation, the paper does not specify whether patients were included in the moderate or high risk categories of infective endocarditis of the latest ESC infective endocarditis prevention guidelines.(5)

Some of the main findings of this study were:

• Only a 37.1% of patients were able to define infective endocarditis, even though only the combination of the words 'infection' and 'heart' or synonyms were used as criteria to consider an accurate definition. Patients with a history of IE were more likely to define it correctly and just 22.7% of the individuals identified a minimum of three of the symptoms suggestive of endocarditis.
• Most of the patients were not aware of the consequences of developing IE (66.7%), either need for prolonged antibiotic treatment (72.7%) of potential need for surgery (49.2%) and only 5.6% of patients were aware that IE could occur more than once.
• Regarding the knowledge of IE risk factors, half of the patients identified dental origin or piercing and tattoos, but just a quarter of them selected poor nail and skin hygiene. In line with that, for the item of engagement in preventive measures a high percentage of patients had at least one annual dental check-up (82.6%) and brushed their teeth daily (91.7%). However just 32% receive antibiotics with every visit to the dentist.
• Roughly, patients with prior IE and higher number of previous surgical or percutaneous procedures had better scores and the presence of learning disability implied worse scores in the questionnaire.

This work, although with limitations, shows the gaps in the knowledge of CHD patients, even followed in a tertiary reference centre, with respect to IE - one of the most dangerous and challenging situations in these patients but that at the same time is preventable and has better outcomes when diagnosed and treated at early stages. A significant percentage of patients reported not having received information from their cardiologist. Whether this is a real fact due to the lack of time in the clinical practice or a perception of the patient, the truth is that the awareness of ACHD population about IE is still very poor.

As authors state in the discussion, a more comprehensive understanding of IE is necessary for patients to fully grasp its importance, prevention, and prompt diagnosis. Improving knowledge of patients and their families, ideally should start from paediatric age, very importantly in the transition period and continue with input during the rest of their lives. Multimodal information can be provided by their doctors, nurses and through peer education by other patients, through visual or audio support, apps or even messages in the general social media. A personalized approach considering the learning abilities of the different patients is also one of the key points to tackle. Finally, education of other healthcare providers involved in the care of these patients, very especially general practitioners is also essential, due to their role in the first line of care and to achieve multidisciplinary management for the best outcomes of the ACHD patients.