Factors influencing the participation of adolescents and young adults with a congenital heart disease in a transition education program: A prospective multicentre controlled study

Abstract

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Impact of a Transition Education Program on the Quality of Life in Pediatric Patients with Congenital Heart Disease: Study Design for a Randomised Controlled Trial

“…Inclusion and exclusion criteria were listed in Table 1. 2.5 Intervention The transition education program is divided into 3 parts, as we recently described in detail [6]: First educational outpatient visit(1 hour): this individual interview with a health educator (e.g. a specialist nurse) aims to determine the patient's educational objectives and needs.…”

“…[1][2][3][4] However, young patients with a CHD are prone to interrupt their follow-up soon after transfer from paediatric to adult cardiology and are therefore at risk to reintegrate the healthcare system when facing a complication. [5,6] Indeed, more than 30% of adults with a CHD are lost to follow-up despite a signi cant risk of arrhythmia, heart failure, pulmonary hypertension and acquired cardiovascular diseases. [7,8] Even patients with lower-complexity CHD are concerned with a higher burden of adverse cardiovascular events relative to the general population.…”

“…[9,10] Transition education programs intend to improve patients' knowledge of their medical condition, and answer their questions about physical activity, sexuality, graduate studies, and professional carriers. [6,11] Those programs aim to promote patient autonomy in order to limit loss to follow-up, and, ultimately, improve medical care.…”

“…Various transition education programs have being experimented worldwide in patients with CHD, however, their real impact on patient care has been scarcely evaluated. [5,6,[11][12][13] Heterogeneity in terms of type of education, disease severity and patient demographic characteristics may result in biased interpretation on the actual program's e cacy. Moreover, patient reported outcomes assessment such as health-related quality of life (QoL), and qualitative analyses, should be part of such education programs' evaluation.…”

“…[19,20] In a pilot study evaluating the implementation of our own transition program, we showed that patients with complex CHD, poor disease knowledge, risk behaviours, and lower age, were more likely to join this transition program. [6] However, these preliminary results come from a non-randomized controlled study. Therefore, the impact of this transition program needs to be determined with a higher level of evidence.…”