Introduction: The transition to eating after intestinal transplant (IT) can be difficult for some children. Children may have had little experience of eating before IT. Studies suggest that disruptions to the process of learning to eat in early childhood may be implicated in eating difficulties but there is no empirical data in IT recipients regarding factors associated with this. Identifying factors that may influence eating after IT could help manage caregiver expectations and plan targeted interventions. The aim of this study was to describe the nutritional intake and eating behaviours of IT recipient children and to explore factors impacting on eating.

Methods: This mixed methods study consisted of quantitative self-completion questionnaires and a three-day food diary followed by a semi-structured telephone interview. Caregivers of the entire UK paediatric IT population were invited to participate. The questionnaires included the Children’s Eating Behaviour Questionnaire and 26 demographic items. Analysis was by descriptive statistics using SPSS. Semi-structured telephone interviews explored caregiver perceptions of their child’s eating, analysed thematically.

Results:The survey response rate was 26% (n=9) with 89% (n=8) of respondents also being interviewed. Of the nine respondents, two were discharged on an exclusive oral diet following IT with three able to wean off tube feeding after between one and five years. Median energy intake was 93% (range, 61-137) of the Estimated Average Requirement and 56% (n=5) were categorised as food avoidant. Transitioning to an oral diet after IT without home tube feeding was statistically significantly associated with complementary foods being introduced at the recommended age, learning to eat, having significant practice and positive eating experiences before IT. The qualitative data supported this as well as providing explanations in relation to three themes: medical, caregiver and child influences.

Conclusion: The study findings present a picture of a complex interplay of factors that can influence eating in IT recipients. This study, although small, provides the first empirical evidence of an association between pre and post-IT eating. The findings suggest that promoting pre-IT eating may be beneficial and indicate that there may be predictors for eating difficulties that could be used to facilitate targeted interventions - further research is required.