Exclusive Enteral Nutrition for the Treatment of Pediatric Crohn’s Disease: The Patient Perspective

Crohn’s disease (CD) is a chronic, incurable and relapsing disease involving any part of the gastrointestinal tract [1, 2, 3, 4, 5]. Incidence is rising globally; however, disease aetiology is still not completely understood. The current consensus is that genetic predisposition combined with altered intestinal microflora and a dysregulated immune response leads to the development of chronic inflammation and, ultimately, CD in some individuals [2, 4, 6, 7].

The goal of therapy for children with CD is to induce and maintain remission [2, 6]. Several treatment pathways for remission induction in pediatric CD are available, with exclusive enteral nutrition (EEN) as the recommended first-line therapy [8, 9]. EEN involves a 6–8-week period of a liquid-only diet using a polymeric formula either orally or via a naso-gastric feeding tube. For children with CD, EEN is reported to be as effective in inducing remission as corticosteroids (CS); however, it provides the additional benefits of much higher rates of mucosal healing (MH), normalization of inflammatory markers, enhanced growth, repletion of micronutrient deficiencies and obviating the need for CS [10]. The restoration of normal growth is a long-term therapeutic target for pediatric CD [11] as the inflammatory process can impact adversely upon a child’s linear growth potential [2, 7]. Long-term outcomes are also improved when remission is induced via EEN, as MH is crucial for long-term remission, resulting in lower relapse rates than in active endoscopic disease [12, 13].

Very few studies have examined the patient experience of EEN. Children and adolescents reported that they feel excluded from family meals and social occasions connected with food and eating due to the restrictions within the EEN protocols [14]. Moreover, they feel isolated, different or ostracised from their peers [15, 16].

Following induction treatment, the manipulation of diet through food avoidance or restriction is common in children with inflammatory bowel disease (IBD) [17, 18, 19, 20, 21]. Navigating nutrition is reported as a lifelong struggle, which decreases the enjoyment and pleasure associated with food [17, 18]. Most patients who complete EEN have not received advice from a health care provider regarding these dietary changes, which may have nutritional consequences [18, 20]. The aim of this study was to assess the child’s experiences and attitudes towards EEN to identify problematic themes and better understand the child’s mindset.

This study identified several interesting themes regarding children’s attitudes and opinions of their experience with EEN. These themes highlighted the common challenges that children face when completing EEN, which disease symptoms are typically the first to improve, and participants’ candid advice to their peers with CD who may also require treatment using EEN. This was the first study to provide a child’s voice to the intervention of EEN for the treatment of CD.

Not surprisingly, half the children reported that they struggled to complete the 8-week course of EEN; however, 36% found it to be an easy process. The reported lack of flavor variety was reportedly the main reason for struggling, followed by a dislike for the taste of the polymeric formula and food cravings. Despite the high percentage of children who struggled to complete EEN, 64% still reported that they would complete another course of EEN if indicated. In addition, 59% of children who participated in this study were taking ongoing maintenance enteral nutrition at the time of completing this survey. This suggests that whilst children do struggle to complete EEN during the 8-week treatment phase, the benefits of EEN outweigh the decision to cease the treatment.

Similarly, to a prior study, the most notable improvement in symptoms was a reported increase in energy [24], followed by reduced nausea and symptom relief. Improved energy is likely due to the combination of mucosal healing and decreased inflammation resulting in an increased appetite and improved nutrient absorption, increased caloric intake and a concentrated quantity of micronutrients in the formulae.

Support is likely a main determinant of a child successfully completing treatment as suggested by the free text survey responses. Moreover, the multidisciplinary team and the dietitian provided weekly review during the child’s EEN which likely attributes to a successful and more compliant course of EEN. Statements that illustrate the importance of support during EEN are “Support is the biggest advantage”, “Being reviewed often by the medical team helps keep you on track”, “Get school on board”, “Don’t be afraid to tell your friends about your IBD and why you are doing EEN because a real friend will support you through the hard times” and “Get your family to participate or to give up their favorite foods during your course of EEN”. Thus, it is essential to listen to the child, to be aware of the psychosocial impact that chronic disease has on a young person, and to provide them with the support they reportedly need to guarantee a successful treatment outcome.

Nutrition plays an important role in etiology and treatment of children with CD. Children with active disease may experience anorexia, early satiety and impaired nutrient absorption which cumulatively impair the overall nutritional status and adversely impact upon normal growth and development [25]. Moreover, children with CD have poorer food-related quality of life compared to their sibling and a control group [26] indicating the psychosocial impact of chronic disease [26].

Disease symptoms affect the psychological well-being of children with CD by affecting their social confidence [27]. Furthermore, children have difficulty maintaining their social activities due to both their disease symptoms and the negative psychological impact of their chronic disease [28]. Moody et al. [29] reported 60% of children are often unable to leave the house, 60% of children have regular school absences, 40% are concerned about going on holidays, 70% are not able to participate in routine sports, and 50% are unable to regularly be social. One child in this study advised that completing EEN “is more a mental game than a physical one” and another child recommends to her peers that “it will help you, so stay positive!”. This further illustrates the mental challenge of completing EEN and the value of acknowledging and discussing this with any child about to complete EEN, so that they can overcome and persevere during treatment.

This study had several limitations including the limited number of participants and their variable age at the time of completing this survey. Moreover, the time of finishing EEN and completing this survey was variable between children, and there was also no analysis completed to assess whether treatment efficacy affected a child’s perception of EEN. A further limitation is that no analysis was completed to assess the reasons why a child’s EEN was not successful. Lastly, this study was completed retrospectively and included qualitative analysis which can be open to interpretation. The strengths of this study are that this is the first study to provide the patient’s voice to the EEN intervention and all participants were treated in a standard protocol at the same tertiary center.

In conclusion, this study reports the perspectives of a group of NZ children about treatment with EEN for their CD. It highlights the impact that both chronic disease and its respective treatment therapies have on a child’s mental well-being, and the need to provide support in all areas of their lives while they are enduring EEN to make the treatment more successful and tolerable. Further studies are required to assess strategies that may provide the best support for children taking EEN and to help alleviate the psychosocial impact of CD as they grown into adulthood.