Henry, Michelle L.*; Atkins, Dan†; Fleischer, David†; Pan, Zhaoxing‡; Ruybal, Joseph*; Furuta, Glenn T.*
*Section of Pediatric Gastroenterology, Hepatology and Nutrition, Gastrointestinal Eosinophilic Diseases Program, Digestive Health Institute, Children's Hospital Colorado, Aurora
†National Jewish Health, Denver
‡Department of Pediatrics, University of Colorado Denver School of Medicine, Aurora, CO.
Address correspondence and reprint requests to Michelle L. Henry, MPH, RD, 13123 East 16th Ave, B270, Aurora, CO 80045 (e-mail: firstname.lastname@example.org).
Received 1 September, 2011
Accepted 4 November, 2011
The present study was supported by NIH/NCRR Colorado CTSI grant no. UL1 RR025780.
The authors report no conflicts of interest.
ABSTRACT: The purpose of the present study was to identify barriers to dietary adherence found in the treatment of children with eosinophilic gastrointestinal diseases (EGIDs) and food allergy. A prospective study using a self-administered survey to parents of children with EGIDs at a national advocacy meeting was completed. Responses from 45 participants describing children ages 1 to 18 years (69% boys) identified that 63% were adherent to food restrictions. Physicians provided dietary instructions more often than dietitians. Nonadherence was associated with lack of school support (P < 0.027). Access to a dietitian may improve the care of children with EGIDs.
Eosinophilic gastrointestinal diseases (EGIDs) are a group of clinicopathologic diseases characterized by a variety of intestinal symptoms that occur in the setting of dense intestinal eosinophilia (1). Although the underlying pathophysiology of EGIDs remains to be clearly defined, many patients exhibit a clinicopathologic improvement in response to the exclusion of allergenic foods, and thus dietary restrictions are a key component of treatment (2–5). The institution and success of elimination diets depend heavily upon comprehensive patient and family education. Nutrition counseling to aid in maintaining normal growth is critical because protein and calcium sources, among others, are often eliminated.
Previous studies propose several factors that may prevent full adherence to a prescribed elimination diet in food-allergic diseases (6,7). Nonadherence to prescribed interventions occurs more commonly in children who have >1 food restriction, experience severe reactions, lack social support, and/or receive limited education (6,7). No study to date has directly measured adherence or examined factors related to adherence to nutritional restrictions in patients with EGIDs. We hypothesized that dietary nonadherence was common in children with EGIDs and related to lack of education and inadequate support systems. The purpose of the present study was to identify barriers to dietary adherence to food restrictions in children with EGIDs and to identify targets to decrease these barriers.
A prospective cross-sectional study was performed to measure factors contributing to dietary nonadherence in children with EGIDs and food allergy (FA). A survey was developed by a registered dietitian (M.L.H.) to identify symptoms associated with FAs, the number and type of FAs, barriers to dietary adherence to food restrictions, and support systems. Patients attending the American Partnership for Eosinophilic Diseases Education Conference held in Broomfield, Colorado, July 17–18, 2010, were recruited to complete surveys. The single eligibility criterion for the present study was a reported diagnosis of FA and EGID. Parents or adolescents (ages 13–18 years) completed surveys within 8 hours of provision. Ages reported are in mean years ± standard deviation. Data were analyzed using SAS 9.2 (SAS Institute, Inc, Cary, NC); χ2 test and 2 sample t tests were used, respectively, for categorical and continuous variables, and P < 0.05 was deemed significant. The present study was approved by the Colorado Multiinstitutional Review Board.
Conference attendees included 170 individuals from 25 states. Forty-two parents of 42 children and 3 adolescents were enrolled in the present study, leading to a total of 45 surveys completed and returned.
Demographic and clinical features are listed in Table 1. Self-reported methodologies used to make the diagnosis of FA included skin-prick testing (95%), food eliminations (91%), and blood testing (84%). Self-reported symptoms are shown in Table 2. Dietary education was provided by physicians (69% of respondents), dietitian (59%), nurses (42%), and others (13%); some patients received education from >1 provider. The majority of patients (56%) reported that it was either “somewhat difficult” or “very difficult” to follow prescribed diets, and 63% reported following prescribed diet restrictions completely.
Reasons for nonadherence to dietary restrictions are listed in Table 3, with the most common reason reported as “wanting to eat a food not allowed on the diet.” A lack of school support was significantly associated with dietary nonadherence in those who attended school; of respondents reporting complete adherence, none reported schools were not supportive, whereas 21% of those reporting nonadherence believed that schools were not supportive (P < 0.027). Respondents who did not follow diet restrictions tended to be older (8.9 ± 4.4 vs 6.1 ± 3.8 years; noncompliant vs compliant, respectively, P < 0.03). No other features (including sex, number of siblings, number of parents who lived in the house, number of other food-allergic patients in the house, ethnicity, likelihood of having symptoms with food ingestion) correlated significantly with dietary nonadherence. Most respondents listed some form of support, including friends, school, hospitals, clinics, Web sites, and faith community, whereas 11% listed none. The most commonly reported support systems were Web sites.
In the present study, we identified that 63% of a narrowly defined group of children with EGIDs and FA reported adherence to prescribed food restriction. Except for lack of school support, dietary adherence was not associated with any other factors that were measured. Dietary education was provided primarily by physicians, a group of care providers who may have less time and often inadequate training to provide complete nutritional guidance. These results identify several opportunities to improve adherence with prescribed elimination diets in this unique patient population.
No study has prospectively and directly measured dietary nonadherence in children with EGIDs and FAs. Studies of children with EGIDs have revealed that diet restriction was effective to a high degree, ranging from 74% to 99% (8–11). Adherence to diet restrictions in patients with immediate-type food hypersensitivity responses ranges from 69% to 89%, and contributing factors to nonadherence in these specific patient groups included older age and limited nutrition education (6,12). Several findings of our study are important because they relate to these factors. First, consistent with immunoglobulin E–mediated food allergic reactions, 63% of children with EGIDs and FAs reported complete adherence to their diet. These figures indicate a large degree of nonadherence that may contribute to lack of success of a prescribed therapeutic plan. Because gastrointestinal symptoms associated with EGIDs are typically not life threatening and sometimes true associations with food ingestion are delayed, compliance may be difficult for patients with EGIDs to achieve. As in children with immediate-type food hypersensitivity reactions, children with EGIDs experience factors that may contribute to nonadherence, including feelings of worry and feeling different from others (13). Second, physicians, as opposed to dietitians, provided the majority of counseling to respondents. Reasons for this are not known but could be related to the fact that EGIDs are a relatively new group of diseases, the care of which care has not yet been standardized. Although treatment options include nutritional exclusions and corticosteroids, no prospective or retrospective studies define specific treatment plans and guidelines. Next, similar to patients with immediate-type food hypersensitivity reactions and diet restriction, children with EGIDs identified here were older, representing an age when compliance with any therapeutic regimen may be difficult. Finally, in contrast to support available for patients with immediate-type food hypersensitivity reactions, networks providing nutritional advice specifically to children and families affected by EGIDs have not been well established. Disease rarity, lack of credibility of the existence of EGIDs within medical and family communities, and limited availability of medical data about efficacies of nutritional restrictions in EGID treatment all likely contribute to the problem of dietary nonadherence.
The limitations of our study include self-reported diagnoses of FAs and EGIDs, small sample size, and lack of a validated survey to assess diet adherence in this select patient group. Practice settings in which children received treatment were not known, which has the potential to influence the type of services and care provided. Families attending this patient symposium may have recently obtained the diagnosis of EGIDs and, as evidenced by attendance at the meeting, were greatly motivated to learn more about the disease. These factors may have influenced adherence.
Several opportunities exist in gastroenterology practices to improve dietary adherence in patients with EGIDs and FAs. Consultation with a registered dietitian is useful to provide a comprehensive nutrition evaluation, documentation of present nutrition, identification of sources of allergen contamination, determination of nutritional deficiencies associated with prescribed diets, and to serve as an ongoing source of information as well as support and motivational techniques with patient-centered counseling. Improved social networking and support systems within medical and social communities can be developed, with a special focus toward older patients. Future studies will be necessary to design validated outcome tools that can measure dietary adherence and the effect of a registered dietitian's counseling of patients with EGIDs and FAs.
We thank the parent participants and the American Partnership for Eosinophilic Disorders for their cooperation with the present study.
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