ESPE Abstracts (2015) 84 P-3-585

Living with Adrenal Hyperplasia for Children in Primary School between 6 and 11 Years; Educational Innovation and Design of a Learning Tool for Therapeutic Education

Catherine Pienkowski, Audrey Cartault, Adelaide Durand, Zeina Ajaltouni, Béatrice Jouret & Maithé Tauber


Hopital des Enfants, Toulouse, France


Background: Congenital adrenal hyperplasia (CAH) is a rare chronic disease diagnosed and treated from birth. Hormone replacement therapy is essential to lead a normal life and must be adapted to stress. Poor compliance to treatment or inefficacy is life threatening leading to high risk of by dehydration and hypoglycaemia.

Objective: The objective of therapeutic education sessions is based on the skills needed for regular intake of pills and recognition of stress for children between 6 and 11 years in primary school.

Patients: 21 patients aged 6–11 years were followed for CAH in our unit; ten girls and 11 boys were treated with 12–15 mg/m2 hydrocortisone three times daily and Fludrocortisone 25–50 mg twice daily.

Method: The therapeutic education session is conducted by a physician, a student and a nurse. It lasts 2 h and ends with a snack, one of two parents may attend. It includes an educational diagnosis (20 mn), an interactive slideshow is presented in four patients (20 mins), a 5 min break with drink and free discussion and interactive games to test their learning with gluing and cutting the personal notebook to the child (20 mn). The session concludes with an evaluation form completed by the child and his/her parents.

Results: All parents wish to participate and they were very satisfied, the session was well suited to their child, they have recognized the need to explain the treatment. The vast majority of the children were happy, they learned about their disease and thought that that it would help them to take their treatment and to recognize stressful situations.

Conclusion: Therapeutic education programs are essential in chronic disease management such CAH and must be developed.

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