LAUSR

The Necker-Enfants Malades Hospital Home Parenteral Nutrition (HPN) program was certified in 1984. It is the largest in France with ~ 40% of the 380 children currently on HPN. More than 800 infants and children have been enrolled in the Necker program since 1984. In 2018, it supported 156 children (age range: 3mths-7yrs): short bowel syndrome (SBS)(n=78), congenital enteropathy (CE) (n=28), total intestinal aganlionosis (TIA) (n=22) or chronic intestinal pseudoobstruction (CIPOS) (n=17); miscellaneous (n=11), > 60% presenting with irreversible intestinal failure (IF): In order to prepare the transition to adulhood and to offer more freedom for leaving the family nest, we train the adolescents (ado) for self cares. In that view, we designed a training program. Methods: Training involves nurses, MD, pharmacists, psychologist, social worker.... It requires time for the team as well as for the adolescent. It is organiszed during the school vacation in 3 steps each lasting 5 days. Step 1:Line disconnexion & illness knowledge; Step 2: Line connexion & body control; Step 3:CVC dressing & information on adult transition. Training also includes an approach focused on their physical and psychological well-being to understand their body and their illness. Results: In 2018, Z adolescents (age range:13–17 years) were trained: SBS (n=2), CE (n=2), TIA (n=1) and CIPOS (n=2). Children received PN 3 to 7 nights a week with bags from the french provider Baxter-Faconnable. At the end of the training program, 4 ado can be considered as fully autonomous on daily basis, 2 are partially (for disconnexion only) and 1 failed to finish the training program. Conclusions: Autonomy is acheived for the majority. However, gaining autonomy does not mean accepting illness or being ready to move into the adult world. It seems that this multidisciplinary approach and the effect of group teaching are beneficial to them. We do continue to adapt the program according to the ado feeling and feedback. P1.47