Heart defects affect nearly 1% of live births each year. The first year of life is for most of these infants a period of clinical vulnerability marked by heart failure, deep cyanosis, or even sudden death. These risks lead some teams to keep infants hospitalized for a long period, sometimes until cardiac surgery.

In France, the number of centers capable of providing this highly technical care is limited, generating health inequalities, particularly for families living at a distance. Moreover, long-term hospitalization has dramatic consequences, both for the child's development) and for the family's social situation.

The Blue-Line e-ETP program dedicated to telemonitoring aims to enable parents to become involved as actors in the care of their child with heart disease, to gain a better understanding of the pathology and the components of its management, and to adopt the appropriate reactions to be implemented in connection with the telemonitoring project.

Evaluation of parents’ needs in ETP by semi-directive interviews; evaluation of the quality of the e-ETP tools through a focus group with the professionals providing therapeutic education. Evaluation of parent's satisfaction with therapeutic education sessions. Evaluation of parent's skills after the ETP sessions through a health literacy questionnaire.

Parents with a satisfactory health literacy score may be included in the Blue-Line pilot study.

We expect this e-ETP program to launch the Blue-Line telemonitoring program.

The deployment of the structured e-ETP program accessible to all the centers of the M3C rare diseases care network.