Simona Rebecchi², Marion Soulie¹, Florence Lacaille¹, Virginie Colomb¹, Bernard Golse²

¹Pediatric Hepatogastroenterology-Nutrition, Hôpital Necker-Enfants malades, Paris, France, Metropolitan; ²Department of Psychiatry, Hôpital Necker-Enfants malades, Paris, France

Aim: to study the quality of life of children on home parenteral nutrition (HPN), waiting or not for small bowel transplantation (SBT), and after SBT.

Patients and Methods: Three groups of children are studied: group 1: on HPN, waiting for SBT; group 2: on HPN, not on the waiting list; group 3: after SBT. We aim to evaluate the children in group 1 three times: T1: before SBT; T2: 6 months after SBT; T3: 18 months after SBT. We use generic questionnaires, adapted to children: Qualin for children 0-3 years-old; Auquei for 3-10 years-old (maximal score 3), two versions for 3-6 years and 6-10 years; OK.ado for the oldest ones (> 11).

Results: Eight questionnaires Auquei in groups 1 et 2, 11 in group 3, could be collected. Global score was 2.19 for children on HPN, and 2.13 after SBT. Items with the highest score were «leasure» for all children. In items «obligations», children post-SBT, whatever their age, were less sastisfied than those on HPN. 3-6 years-old were the least satisfied with items «autonomy», and «relations with the outside world»: children after SBT fared even worse (1.83) than those on HPN (1.92). For the 6-10 years-old, the lowest scores were for «separation » (1.34 for SBT; 1.6 for HPN), and «parents» for children on HPN. 6-10 years-old after SBT were satisfied for the item « parents » (2.25). 3-6 years-old, on HPN or post-SBT, were satisfied for «familial environment».

Conclusions: Our prospective study before and after SBT will help us to improve the understanding and follow up of the patients through this difficult procedure.