P650 Patient perceptions of food-based dietary treatment of Crohn’s disease: a survey of paediatric patients previously treated with exclusive enteral nutrition
V. Svolos*1, K. Gerasimidis1, V. Garrick2, L. Curtis2, J. Hay2, E. Buchanan2, R. Russell2, R. Hansen2
1Human Nutrition, School of Medicine, College of Medical, Veterinary and Life Sciences, University of Glasgow, Glasgow Royal Infirmary, Glasgow, United Kingdom, 2Department of Paediatric Gastroenterology, Hepatology and Nutrition, Royal Hospital for Children, Glasgow, United Kingdom
Exclusive enteral nutrition (EEN) is the primary treatment in active paediatric Crohn’s disease (CD) and there is emerging evidence that exclusion diets can treat or prevent disease flare ups. The aim of this questionnaire survey was to explore beliefs/issues around the use of EEN and acceptability of an alternative solid food diet (SFD) by paediatric CD patients and their parents/carers.
We retrospectively surveyed all the families of the paediatric patients who have been treated with EEN over 1 year by the IBD team at the Yorkhill Hospital. This was achieved by posting 2 copies of a questionnaire, which were both very similar, asking the parent/carer and the CD child/young person. A reminder was sent out 2 months later to encourage response. Questions explored participants’ demographic characteristics; opinion on how difficult EEN was and SFD would be; acceptability of an EEN course repeat, if needed; and intention to participate in a future clinical trial assessing the therapeutic efficacy of a SFD on CD.
In total, 41 paediatric patients were identified, and a total of 82 questionnaires were posted to them. Of these questionnaires, 58 (71% response) were returned providing information on 29 CD children (median age, 13.3; IQR, 4.0), of which 20 (69%) were boys. The majority of them completed 8 weeks on EEN (n = 23, 79%), whereas 55% had to use nasogastric tubing during the treatment course. Both patients and their carers rated EEN course to be significantly more difficult when compared with an alternative SFD (median, patients 62 vs 23; carers 50.5 vs 26.5, both p < 0.03). Diet ratings by patients was strongly correlated to those of parents (EEN r = 0.831, SFD: r = 0749, both p < 0.001). Approximately two-thirds of the patients and their carers (59%) were positive on completing another EEN course in a further relapse, however a high proportion of participants thought a SFD would be better than EEN (patients, n = 19, 66%; carers, 21/72%). Participants reported that they would agree to participate in a trial comparing EEN with an alternative SFD in a high percentage (patients 52%; carers 66%). When they were given further explanation of a hypothetical randomised controlled trial, which would recruit only patients in need of EEN treatment, this percentage was further increased (patients 23/79%; carers 21/72%). Comments quoted by the participants included: ‘the liquid-only diet was very isolating at times for my child’; ‘I would like to try the solid food diet to avoid steroids in future’; and ‘I think being on the other diet may make her feel more normal and part of the family’.
This survey concluded that there is a positive attitude and perception on the use of a SFD as an alternative to EEN for the treatment of paediatric CD.