Transition Care Model for Adolescents With Congenital Heart Disease (TELEMACO)
Congenital Heart Disease
About this trial
This is an interventional supportive care trial for Congenital Heart Disease focused on measuring congenital heart disease, transition care, quality of life, engagement
Eligibility Criteria
Inclusion Criteria: Adolescent patients (aged between 12 and 18 years) Diagnosis of CHD, according to 2018 AHA/ACC Guideline for the Management of Adults With Congenital Heart Disease All patients who express the willingness to participate in the study through the signing of the informed consent form and signature of informed consent by patients' parents Moderate and Complex CHD, according to the classification described by Warnes Exclusion Criteria: Chromosomal abnormalities such as Down's syndrome and Marfan's syndrome Patients with cognitive impairment (assessed using Six Item Screener, SIS): if SIS ≤4 Not understanding the Italian language Patients in pregnancy Simple CHD, according to Warnes (2001) (25).
Sites / Locations
- IRCCS Policlinico San DonatoRecruiting
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
Transition care model
Usual care
Patients in the experimental arm will receive the TC intervention which encompasses three main pillars that guided a standardized and structured clinical pathway to ensure an optimal transition from childhood care to adult care. Briefly, the first pillar was designed to improve the understanding of the clinical condition through tailored education. Healthcare providers delivered specific information and education strategies. The second pillar aimed to support the development of functional coping strategies by discussing with a counselor and/or a psychologist. The TC encompassed for this pillar both structured face-to-face discussions and counseling moments. The third pillar hoped to improve the engagement of CHD adolescents and their families.
Patients in the control arm will receive a usual care approach without the high focus on standardization given by the experimental arm (e.g. without flyers and booklets or standardized moments of face-to-face counseling). Data collection will be performed using a consistent approach with the one described in the experimental arm: every three months in a year (T0, T1, T2, T3, and T4).