Introduction: Medical and surgical advances have contributed to improving long term survival following intestinal transplantation (ITx). Effects on developmental progress are not well documented in children. In our centre, children assessed for ITx undergo a standardised age appropriate developmental assessment pre transplant. Children are formally reassessed post-transplant in order to direct appropriate therapy intervention and optimise outcomes.

Aim: To report on the long term developmental outcomes of children following ITx.

Methods: A retrospective review of physiotherapy records and Liver unit database was performed to identify children with ITx who had developmental assessment. Children who had pre and post transplant assessment (> 9 months post ITx) were included in the study. Developmental progress pre and post-transplant was measured using the Bayley Scales of Infant Development (BSID II and III) and/or the Movement Assessment Battery for Children (MABC I and II). Children were classified into normal, mild delay and significant delay according to the scores for the respective tests. Children in the initial years of the programme who were too unwell to have a developmental assessment, physiotherapy records were not traceable, who had pre-transplant assessment but no post-transplant assessment, had only one post Tx assessment were excluded from the study.

Results: 31 children were included in the study. 23/31 children had pre-Tx and post-Tx developmental assessment. 8 children had only post Tx assessment, of which two children had only one post-Tx assessment and were excluded from the study.

12/23 had significant delay in motor skills, 6/23 had mild delay and 5/23 were normal at pre-Tx developmental assessment. In 6/12 with significant delay- there was improvement in further follow-up transplant assessment. In 11/23 of children with mild delay and normal development, 8 remained stable and showed an improvement, while there was a decline in motor development in 3 children (2 children with mild delay and one child with normal development).

Discussion: In majority of children an improvement was seen after 12 months and 60% have motor development scores comparable to the peers. The 3 children who had delayed motor development had different tests in pre (BSID) and post (M-ABC) transplant assessment. Hence it was difficult to interpret if a low score was an actual decline or a mis-representation of scores in different tests. Children who had a delayed motor development had additional physiotherapy input to encourage and facilitate developmental progress and achieve optimal physical outcomes.

Conclusion: A majority of Children following intestinal transplantation improve in their motor development. Ongoing physiotherapy input in long term followup is an important part of the management of ITx children in long term follow-up.

Multidisciplinary intestinal transplant team at Birmingham Children's Hospital.