Assessing Barriers to use of the Specific Carbohydrate Diet in Pediatric Inflammatory Bowel Disease: A Qualitative Study

Objectives: Because of the high cost and associated toxicities of pharmacotherapy treatment for inflammatory bowel disease (IBD), there has been growing interest in dietary therapy. The objective of this study is to assess barriers to initiating or maintaining the specific carbohydrate diet (SCD) to inform strategies for improving access and adherence to the diet. Methods: We conducted semistructured interviews with parents of 10 children with IBD receiving care at a single academic treatment center. Parents were eligible if their child with IBD was either currently on the SCD, previously on the SCD, or opted not to initiate the SCD. Core questions were developed in conjunction with IBD clinical experts. Interviews were transcribed and analyzed using an inductive approach. Results: Parents of children diagnosed with IBD primarily chose to try the SCD because of concerns about medication safety. Three major barriers to utilizing the SCD emerged: cost, time commitment, and psychosocial impact. Many parents also expressed that following the SCD got easier over time and some parents experienced spillover effects of improved personal health and understanding of nutrition. All parents were strong proponents of the importance of diet in managing IBD and expressed desire for more research into the SCD and other forms of dietary therapy. Conclusions: These findings provide important insight into factors affecting utilization of the SCD in pediatric IBD. Further research is needed to develop interventions or strategies to diminish these barriers and enable more patients to benefit from the SCD.