Intestinal Failure (New York, N.Y.) · 2025
Long term outcomes of no gut syndrome in children - A multicentre study.
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Cernat Elena, Hill Susan, Wood Rachel, Butt Assad, Buxton Sally, Cheng Jeng, Goldthorpe Jenny, Hind Jonathan, Koglmeier Jutta, Onyeador Nkem, Protheroe Sue, Rajani Sunita, Richards Catherine, Salvestrini Camilla, Smith Chris, Urs Arun, Batra Akshay
Аннотация
BACKGROUND: Children with extreme short bowel syndrome, including those who have undergone resection of the entire jejunum and ileum-termed "No Gut Syndrome" (NGS) in the adult literature-are now surviving due to advancements in parenteral nutrition (PN) and medical care. This study aims to describe the population characteristics and long-term outcomes of children with NGS.
MATERIAL AND METHODS: A questionnaire was distributed to the paediatric intestinal failure (IF) centres in the UK to identify patients with NGS discharged home on PN. Inclusion criteria: infants/children < 18 years with duodenum plus up to 5 cm jejunum and colon (total/partial). Follow-up data was collected two years after the initial recruitment. A multicentre Health Research Authority approval was obtained.
RESULTS: 19/20 (95 %) IF centres managing 379 HPN patients responded - 27/379 (7 %) had ultrashort-bowel syndrome (U-SBS) and an additional 14/379 (4 %) NGS. Aetiology of NGS was - midgut volvulus (64 %), bowel ischaemia (22 %), necrotising enterocolitis (7 %), jejuno-ileal atresia (7 %).Nine patients had a colonic remnant in continuity. Thirteen/14 patients (93 %) remained stable on PN with one weaned off following small bowel transplant. Nine/13 (69 %) patients received > 80 % of EAR as PN and 4/13 (31 %), 30-80 %. Eight/13 (61 %) tolerated some form of enteral nutrition. There were no deaths during the follow-up period. Educational outcomes were positive showing that 11/14 (79 %) are attending school, 2/14 (14 %) nurseries with 1 awaiting enrollment (7 %).
CONCLUSION: Advances in PN and health care have improved the long-term survival of patients with NGS. In addition, these children are attending school and participating in daily activities without significant limitation.
MATERIAL AND METHODS: A questionnaire was distributed to the paediatric intestinal failure (IF) centres in the UK to identify patients with NGS discharged home on PN. Inclusion criteria: infants/children < 18 years with duodenum plus up to 5 cm jejunum and colon (total/partial). Follow-up data was collected two years after the initial recruitment. A multicentre Health Research Authority approval was obtained.
RESULTS: 19/20 (95 %) IF centres managing 379 HPN patients responded - 27/379 (7 %) had ultrashort-bowel syndrome (U-SBS) and an additional 14/379 (4 %) NGS. Aetiology of NGS was - midgut volvulus (64 %), bowel ischaemia (22 %), necrotising enterocolitis (7 %), jejuno-ileal atresia (7 %).Nine patients had a colonic remnant in continuity. Thirteen/14 patients (93 %) remained stable on PN with one weaned off following small bowel transplant. Nine/13 (69 %) patients received > 80 % of EAR as PN and 4/13 (31 %), 30-80 %. Eight/13 (61 %) tolerated some form of enteral nutrition. There were no deaths during the follow-up period. Educational outcomes were positive showing that 11/14 (79 %) are attending school, 2/14 (14 %) nurseries with 1 awaiting enrollment (7 %).
CONCLUSION: Advances in PN and health care have improved the long-term survival of patients with NGS. In addition, these children are attending school and participating in daily activities without significant limitation.