Outcomes of a two year educational prevention program

Introduction

The growing population of patients living with congenital heart disease (CHD) has led to an increased use of prosthetic material, placing many at high-risk for infective endocarditis (IE). To reduce this risk and its associated morbidity and mortality, we implemented an institutional educational prevention program (EPP). This study evaluated patient adherence to the program and outcomes after two years.

Method

This was a prospective, observational, and single-center study. Inclusion criteria comprised age > 10 years and high-risk for IE, defined by the presence of prosthetic material, chronic cyanosis and/or prior history of IE. The EPP included an initial individual consultation, followed by a full in-person day at our institution featuring age-specific group sessions. This one-day educational intervention focused on CHD understanding, IE prevention, dental and cutaneous care with tailored workshops and multidisciplinary team. Systematic follow-up was conducted at 6 months and 1 year.

Results

Between November 2022 and March 2025, 150 patients completed the initial step, and 112 (74.6%) attended the full program. Of these, 65% were male, with a median age of 21 years [7–75], median weight of 61 kg [48–74], height of 164 cm [155–174], and BMI of 21 kg.m2 [18–25]. CHD severity was classified in simple (14.2%), moderate (46.4%), or complex (33.9%). Risk factors for IE included prosthetic material (n = 101), a history of prior IE (n = 11), and Eisenmenger syndrome (n = 4). The median time since the last cardiac surgery was 5.6 years [1.7–23.4]. The median time since the last catheterization was 2.2 years [1.4–13.8]. Prosthetic material, defined as bioprothesis, conduit, or mechanical valve, was located on the right side in 72.3% of patients, the left side in 7.1%, and on both sides in 7.1%. The median follow-up duration after EPP participation was 1.2 years [0.8–1.8]. No cases of IE or deaths were reported. Patient satisfaction was consistently high, attributed to the dedicated time for interaction and collaboration among patients, multidisciplinary specialists, and the presence of patient association.

Conclusion

The EPP showed high level of adherence and acceptability among participants. Although follow-up duration is currently limited, the absence of IE to date suggests a potential beneficial effect on IE prevention in high-risk CHD patients. Ongoing mid- and long-term follow-up will be essential to confirm sustained benefits and outcomes.