Exclusive enteral nutrition (EEN) is a therapy for pediatric Crohn’s disease that is rarely utilized in the United States (CD). There is little information available about the viewpoints of patients and parents on this therapy technique. The purpose of this study was to identify parent and provider opinions on EEN and to comprehend parent-identified impediments to its usage. Researchers polled the parents/guardians of CD children aged 1 to 17 in our institution on EEN. A retrospective chart review was used to compare healthcare providers’ opinions on the reasons for discontinuing EEN with those indicated by survey respondents. The survey was completed by 155 out of 184 recipients. Ninety percent of those polled had heard of EEN, but just 26 percent had addressed it with their gastroenterologist. Thirty-eight patients had previously been treated, and 15 were now on EEN. Current EEN users frequently mentioned cost/finance issues and challenging social circumstances as obstacles. The majority of the children who discontinued EEN did so because their parents believed it was ineffective. Their main gastroenterologist noted treatment failure in four of these patients and nonadherence in six.
Despite the effectiveness of EEN and patients with CD’s interest in dietary therapy, there are several impediments to efficient communication and successful implementation of dietary therapies. Future study is required in the areas of patient-physician communication, cost reduction, and coping with the social restrictions of dietary treatments.
