Adults With Congenital Heart Disease: Patient Knowledge of Endocarditis Prophylaxis

doi:10.4065/70.1.50

Mayo Clinic Proceedings

Volume 70, Issue 1, February 1995, Pages 50-54

https://doi.org/10.4065/70.1.50 Get rights and content

Objective

To determine whether adults with congenital heart disease have adequate knowledge of infective endocarditis and endocarditis prophylaxis and to ascertain whether an educational program effectively improves patient knowledge and compliance.

Material and Methods

We asked 102 consecutive patients to complete a 12-question survey to assess their knowledge of heart disease, infective endocarditis, and endocarditis prophylaxis.

Results

Of 102 patients, 100 (98%) completed the questionnaire. Sixty-eight patients knew the name of their heart disease. Fifty patients correctly defined endocarditis, but only 43 knew hygiene measures that could prevent endocarditis. Ninety-six patients knew that they needed to take “a medicine” before dental procedures, and 76 of those patients (79%) knew that an antibiotic was necessary. Patient use of cardiac medications and a history of endocarditis correlated significantly with knowledge of endocarditis. Patients who had been to the Adult Congenital Heart Disease Clinic at least once knew endocarditis prevention measures and the importance of regular dental and cardiology follow-up significantly more frequently than did first-time attendees. Despite educational counseling, however, patient recall of endocarditis and its prevention is disappointing.

Conclusion

Many adults with congenital heart disease have inadequate knowledge of their cardiac lesion, endocarditis, and endocarditis prophylaxis. Educational efforts for adults with congenital heart disease need to be updated and reinforced regularly.

Section snippets

MATERIAL AND METHODS

Between May and August 1993, 102 consecutive patients who attended the Mayo Clinic ACHDC were asked to complete a 12-question survey (Table 1) about knowledge of their heart disease, medications, infective endocarditis, and endocarditis prophylaxis. All patients who came to the clinic during that period were eligible for study participation. Patients completed the questionnaire while waiting for their ACHDC appointment; they were unsupervised at that time. No patient had previously received

RESULTS

Of the 102 patients, 100 (58 female and 42 male [98%]) returned completed questionnaires. The ages of the participants ranged from 16 to 71 years; the mean age was 35.9 ± 13.3. Ninety-three patients were high school graduates.

Sixty-eight patients knew the correct name of their cardiac disease. The cardiac lesions of our study patients are listed in Table 3. Of the 59 patients who were taking cardiac medications, 58 (98%) knew the correct name (or names) of their medication. Of the 76 patients

DISCUSSION

In 1955, the American Heart Association Committee on Prevention of Rheumatic Fever and Bacterial Endocarditis published prophylaxis recommendations for bacterial endocarditis.⁹ These recommendations were revised most recently in 1990.¹⁰ Since 1955, the American Heart Association has conducted an extensive awareness campaign, including the distribution of literature and wallet-sized cards to patients with congenital heart disease at risk for infective endocarditis.

Despite such extensive

CONCLUSION

Adults with congenital heart disease have inadequate knowledge of infective endocarditis and endocarditis prophylaxis. Clearly, educational efforts are helpful, but patient recall is still disappointing. Health professionals who are responsible for the care of adults with congenital heart disease need to reinforce established information about endocarditis and simple preventive hygiene measures. At each clinic visit, literature should be provided to and reviewed with all adult patients with

REFERENCES (21)

L Saiman et al.
Pediatric infective endocarditis in the modern era
J Pediatr
(1993)
SM Awadallah et al.
The changing pattern of infective endocarditis in childhood
AmJCardiol
(1991)
F Cetta et al.
Adolescent knowledge of bacterial endocarditis prophylaxis
J Adolesc Health
(1993)
RG Petersdorf
Antimicrobial prophylaxis of bacterial endocarditis: prudent caution or bacterial overkill?
Am J Med
(1978)
MS Croxson et al.
Dental status and recurrence of Streptococcus viridans endocarditis
Lancet
(1971)
JM Steckelberg et al.
Influence of referral bias on the apparent clinical spectrum of infective endocarditis
Am J Med
(1990)
EL Kaplan et al.
A collaborative study of infective endocarditis in the 1970s: emphasis on infections in patients who have undergone cardiovascular surgery
Circulation
(1979)
TL Stull et al.
Endocarditis in children
D Kaye
Definitions and demographic characteristics
WM Gersony et al.
Bacterial endocarditis in patients with aortic stenosis, pulmonary stenosis, or ventricular septal defect
Circulation
(1993)

There are more references available in the full text version of this article.

Cited by (66)

Cardiac catheterization laboratory and the role in effective patient education: A model approach
2021, Progress in Pediatric Cardiology
Citation Excerpt :
Patients with Congenital Heart Disease (CHD) and their families usually have a basic understanding of cardiac anatomy and an overall idea of the potential interventions [3,4]. Due to their disease complexity, many physicians use drawings or analogies to explain their cardiac condition, giving patients an adequate understanding of their condition but often not enough to facilitate discussions of therapeutic alternatives or provoke inciteful questions before high-risk interventions [5–8]. Based on recognized challenges surrounding patient education, studies have shown how 3D printed models (3DPM) improve patients' and families' understanding due to a more efficient exchange of information, more interactive, and fairer communication process overall.
In recent years, the use of three-dimensional printed models (3DPM) has been described as a tool to facilitate doctor-patient communication. The application of 3DPMs in procedural planning for patients with Congenital Heart Disease (CHD) has also been well described. 3DPMs have a potential role in improving understanding of cardiac anatomy for families and patients, increasing patient satisfaction, and optimizing doctor-patient communication.
The purpose of this study was to report our experience using 3DPM for patient education and to compare this modality with other methods already available.
We performed a cross-sectional study using a family questionnaire for patients who underwent cardiac catheterizations at Children's Hospital Colorado between September 2019 to August 2020, for whom a 3DPM was produced from 3D Rotational Angiography (3DRA). Questionnaires were completed before and after receiving and scrutinizing their 3DPM. Data were compared to assess patient satisfaction before and after having possession of their 3DPM, evaluating the improvement in their understanding of the child's cardiac anatomy and satisfaction ratings given by patients and their families.
Subjects described their disease understanding as “moderate” before receiving the 3DPM. After receiving the model, significant improvements were observed in understanding their cardiac diagnosis and patient satisfaction scores in CHD patients and their families. After the intervention, families, and patients identified 3DPMs as their preferred modality to facilitate medical explanations.
The application of 3DPM allowed increased understanding of cardiac anatomy and improved satisfaction scores in our CHD patients and their family cohort.
Are adults with congenital heart disease informed about their risk for infective endocarditis and treated in accordance to current guidelines?
2017, International Journal of Cardiology
Citation Excerpt :
The terms endocarditis and antibiotic prophylaxis were known to only 16% and 22% of patients, respectively; and only 58% could name at least one situation that carries a risk of infection [13]. In a study from the Mayo clinic, only around 50% of the patients (n = 100) correctly defined endocarditis and knew hygiene measures that could prevent it [14]. In a more recent Belgian study, 62 ACHD patients completed a questionnaire about their knowledge regarding their CHD [15].
Adults with congenital heart disease (ACHD) have an increased risk for infective endocarditis (IE). In the last decade, the recommendations for IE prophylaxis have changed substantially. The knowledge level of patients about IE and IE prophylaxis has not been studied.
Patients recruited via the German National Register for Congenital Heart Defects were invited to an online survey about IE. Patients were divided into two groups based on ESC guidelines: high IE risk (antibiotic prophylaxis recommended) and low IE risk (prophylaxis not recommended).
Overall, 1458 patients participated and out of these 1211 (age 30.5 ± 11.8 years, female = 54.2%) with detailed clinical information were further analyzed. 343 patients had a high IE risk, whereas 868 had a low risk. Overall, 74.5% (n = 902) stated to know what IE is (low IE risk: 71.3%, high IE risk: 82.5%) Out of these who stated to know what IE is (n = 902), 76.5% (n = 690) chose the correct answer in a multiple choice question (low IE risk: 76.4%; high IE risk: 76.7%). Antibiotic prophylaxis was known to 66.2% (low IE risk: 59.9%; high IE risk: 82.2%). Out of these who stated to know what antibiotic prophylaxis is (n = 802), 83.8% (n = 672) chose the correct answer in a multiple choice question (low IE risk: 82.9%; high IE risk: 85.5%).
This study reveals important knowledge gaps regarding IE and antibiotic prophylaxis in ACHD patients. A discussion about IE and antibiotic prophylaxis should take place with every ACHD patient during regular clinical contacts to close this knowledge gap.
Disease knowledge, perceived risk, and health behavior engagement among adolescents and adults with congenital heart disease
2015, Heart and Lung
Survivors of congenital heart disease (CHD) are at risk for life-threatening complications as they age. This study aimed to examine the association of knowledge of future health risks, perceived risk, and health behaviors among adolescents and adults with CHD.
CHD survivors (N = 200, ages 15–39; 23% simple, 44% moderate, 33% complex lesions) completed measures of risk knowledge accuracy and perceived risk for developing complications, and reported physical activity and saturated fat intake.
CHD survivors reported poor risk knowledge and consuming high-fat diets. Adolescents reported more physical activity than young adults. Greater risk knowledge was associated with lower fat intake, and participants who exercised more expected fewer future complications, and this difference remained statistically significant when accounting for education and age.
CHD survivors, regardless of age, have poor risk knowledge and diets. Survivors may benefit from emphasis on future health risks and health behaviors from both pediatric and adult providers.
Adolescents' understanding of their congenital heart disease on transfer to adult-focused care
2010, American Journal of Cardiology
Adolescents with congenital heart disease (CHD) must take responsibility for their life and care. This requires that they have sufficient knowledge about their heart disease, treatment, and preventive measures. Thus, CHD-related education should be directed to adolescents. Research on adolescents' understanding and knowledge of CHD is limited. It is unknown what adolescents with CHD know about their heart defect, treatment, and preventive measures necessary to avoid complications. We addressed these questions in a descriptive cross-sectional study of 91 adolescents with CHD (53% males; median age 17 years). In the present study, we assessed the subjects' knowledge of CHD using the Leuven Knowledge Questionnaire for Congenital Heart Disease. The results showed that the patients had adequate knowledge (>80% correct answers) about the need for regular follow-up, their required diet, past treatment, and dental practices. They had moderate knowledge (50% to 80% correct answers) about the frequency of follow-up, occupational choices, medication regimen, and sexual activities. However, the patients had poor knowledge (<50% correct answers) of the name of their heart defect; the reasons for follow-up; the effects of competitive sports; the symptoms that reflect deterioration of their heart disease; the definition, characteristics, and risk factors of endocarditis; the possibility of recurrent episodes of endocarditis during their lifetime; the effect of smoking and alcohol on their heart disease; the hereditary nature of their condition; the suitability of intrauterine devices as contraceptives; the appropriateness of oral contraceptives; and the risks of pregnancy. In conclusion, the results of the present study have showed that the level of knowledge of adolescents with CHD has significant gaps.
INFECTIVE ENDOCARDITIS
2009, Feigin and Cherry's Textbook of Pediatric Infectious Diseases, Sixth Edition
ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease
2008, Journal of the American College of Cardiology

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Mayo Clinic Proceedings

Objective

Material and Methods

Results

Conclusion

Section snippets

MATERIAL AND METHODS

RESULTS

DISCUSSION

CONCLUSION

REFERENCES (21)

Pediatric infective endocarditis in the modern era

J Pediatr

The changing pattern of infective endocarditis in childhood

AmJCardiol

Adolescent knowledge of bacterial endocarditis prophylaxis

J Adolesc Health

Antimicrobial prophylaxis of bacterial endocarditis: prudent caution or bacterial overkill?

Am J Med

Dental status and recurrence of Streptococcus viridans endocarditis

Lancet

Influence of referral bias on the apparent clinical spectrum of infective endocarditis

Am J Med

A collaborative study of infective endocarditis in the 1970s: emphasis on infections in patients who have undergone cardiovascular surgery

Circulation

Endocarditis in children

Definitions and demographic characteristics

Bacterial endocarditis in patients with aortic stenosis, pulmonary stenosis, or ventricular septal defect

Circulation

Cited by (66)

Cardiac catheterization laboratory and the role in effective patient education: A model approach

Are adults with congenital heart disease informed about their risk for infective endocarditis and treated in accordance to current guidelines?

Disease knowledge, perceived risk, and health behavior engagement among adolescents and adults with congenital heart disease

Adolescents' understanding of their congenital heart disease on transfer to adult-focused care

INFECTIVE ENDOCARDITIS

ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease

Subspecialty Clinics: CardiologyAdults With Congenital Heart Disease: Patient Knowledge of Endocarditis Prophylaxis

Objective

Material and Methods

Results

Conclusion

Section snippets

MATERIAL AND METHODS

RESULTS

DISCUSSION

CONCLUSION

J Pediatr

AmJCardiol

J Adolesc Health

Am J Med

Lancet

Am J Med

A collaborative study of infective endocarditis in the 1970s: emphasis on infections in patients who have undergone cardiovascular surgery

Circulation

Endocarditis in children

Definitions and demographic characteristics

Bacterial endocarditis in patients with aortic stenosis, pulmonary stenosis, or ventricular septal defect

Circulation

Subspecialty Clinics: Cardiology
Adults With Congenital Heart Disease: Patient Knowledge of Endocarditis Prophylaxis