Rationale: Major advances in recent years have resulted in improved survival for patients with chronic intestinal failure (CIF). There is
very little data on the future of children that became adult with CIF. The aim of our work was to describe this population since the
existence of our center.
Methods: In an approved HPN centre for adult with a dedicated activity for CIF since 1984, we collected retrospectively all data
related to patients treated with home parenteral nutrition during infancy (at least 4 years before transition to our centre) and
transferred in our centre since 1984. We evaluated demographic data, the social evolution and the main complications at the
adulthood. The final time of data collected was the 1th December 2017. Results were expressed as median[±SD].
Results: Among a total of 870 HPN patients since 1984 and 2017, 44 young adults (17F/27M) were transferred from 3 paediatric
hospitals. Age of transition was 19±2 years. The principal etiologies of CIF were short bowel syndrome (n=18), CIPO (n=21),
mucosal disease (n=5). At the end of follow up defined as the latest news (december 2017) or death, 7/44 patients were deceased (2
after intestinal transplantation, 3 after a sepsis, 2 due to liver failure), 3/44 were weaned off PN (2 due to growth factors, 1 after
intestinal transplantation), 33/44 were alive requiring HPN (6±1,7 infusions/week; 2,2±1,3l/day; 29±13kcal/kg/day). Oral intake was
2000±1085kcal/day but 9/44 presented remaining oral disorders. Seventeen/44 had a regular work (35±6,5hours/week). 23 lived with
their parents; 17 lived in partnership and 7 had at least one child.
Conclusions: Despite progress in survival and quality of life in HPN, many children who become adults stay with their parents and
do not work. The transition requires probably a better social, educational and psychological preparation if we want to improve the
future of these patients.