Barriers to Exclusive Enteral Nutrition for Induction of Remission of Childhood Crohnʼs Disease

Abstract

BACKGROUND: Studies have confirmed the efficacy of enteral nutrition for induction of remission in children with Crohn's Disease (CD) and this is first line therapy with the UK. The use of exclusive enteral nutrition can avoid exposure to corticosteroids and associated side effects, but lengthy treatment courses may be daunting and affect adherence, with previous studies identifying this can be a barrier to accepting such treatments. We recently completed a randomised controlled feasibility trial investigating whether the length of treatment with enteral nutrition in paediatric patients impacts on remission rates and withdrawal from therapy. The aim of this element of the trial was to identify barriers to accepting or continuing enteral nutrition for induction of remission of Crohn's disease in children.

METHODS: The study was completed in Royal Manchester Children's Hospital, a tertiary paediatric unit within the UK with approximately Patients were randomised to receive 4, 6, 7, 8, or 10 weeks exclusive polymeric enteral nutrition. Patients were interviewed at baseline, 4 and 10 weeks by the principle investigator. They were specifically asked about their views on the therapy, tolerability and compliance issues. The investigator kept a field journal of these interviews. At completion of the study, these notes were analysed by a researcher who had no direct involvement in the study. A thematic analysis using a grounded theory methodology was employed. The analysis proceeded through 3 stages, consisting of open, axial, and selective coding, with constant comparison taking place throughout each phase. Each stage provided categories that could be used to explore the themes of the data in relation to the aims of the study.

RESULTS: Analysis of 75 diary entries led to 203 open items coded. Eleven themes were synthesized at the axial level leading to 4 selectively coded themes. The first theme was efficacy. Whilst parents often preferred this to the option of corticosteroids, they were concerned that shorter courses may not be effective. The second theme was tolerability. Children often elected to take corticosteroids rather than exclusive liquid diet, commenting that in particular "longer lengths of therapy would be intolerable." The third theme was adverse events. Parents were very concerned with side effects associated with other medications, whilst children were less concerned with such issue. The final theme was the length of therapy. There was general consensus that shorter lengths of therapy would be extremely beneficial, with more tolerability and acceptability amongst children, but only if efficacy can be demonstrated at shorter durations.

CONCLUSIONS: This is the first study to investigate barriers to accepting or continuing enteral nutrition for induction of remission of CD amongst children using a robust qualitative methodology. Parents are keen to use exclusive enteral nutrition as they perceive a lower risk of long term side effects. However, children are very concerned with the tolerability of particularly longer causes, expressing that they would prefer shorter lengths of therapy. Further research to investigate if such shorter courses of therapy are efficacious is needed.