The Gluten Free Diet: Assessing Adherence in a Pediatric Celiac Disease Population

Abstract

Background A strict, lifelong, gluten-free diet (GFD) remains the sole treatment for celiac disease (CD). The assessment of adherence to the GFD in pediatric studies is often based on self-report and visual analogue scales which lack proven validity. We sought to compare parental-report of GFD adherence to expert registered dietitian (RD) assessments, the best available standard. Methods Parents of children with biopsy-proven CD scored their adherence to the GFD on a five-point Likert scale similar to that used in previous pediatric CD studies. Each family was then evaluated by an RD expert in CD management who conducted a comprehensive and standardized assessment and scored the family’s adherence. The agreement between parents and the RD was assessed using paired t test and intraclass correlation coefficient (ICC) based on their scores. Results One hundred twenty-two children and their families participated in the study, with a median of 32 months on a GFD. Excellent adherence (score 5 out of 5) was attributed to 60.5% of the sample by the RD. The parents scored adherence higher than the RD by an average difference of 0.41 scale points (95% CI, 0.28–0.54; P < 0.001). The agreement between parents and the registered dietitian was poor (ICC = 0.21). Conclusion Reliance on self-report through Likert scales for GFD adherence overestimates adherence and misses opportunities for patient and family education. Approximately 40% of children with CD have ongoing gluten exposure, highlighting the need for regular assessment by an RD expert in the GFD to identify education and counselling needs for children with CD.

The Experience of a Gluten-free Diet in Children with Type 1 Diabetes and Celiac Disease

“…Reported adherence to a GFD was high: 92% and 100% in children with T1DCD and CD, respectively. For children with CD, other Canadian studies have found overall, self-reported adherence ranging from 69% to 95% ( 11 , 12 ). For patients with T1DCD, previous studies suggest that adherence, both self-reported and by dietician or serological assessment, varies greatly, from 25% to 69% ( 13–16 ).…”

“…For patients with T1DCD, previous studies suggest that adherence, both self-reported and by dietician or serological assessment, varies greatly, from 25% to 69% ( 13–16 ). Self-reported adherence has been shown to overestimate true adherence in comparison to evaluation by a registered dietitian ( 12 ). However, the high rates of adherence reported for both groups in this study are supported by participants with available recent TTG results, among whom 85% of T1DCD and 75% of CD had TTG levels within reference range.…”

Does a gluten-free diet lead to better glycemic control in children with type 1 diabetes? Results from a feasibility study and recommendations for future trials

“…Adherence to a GFD was evaluated at 3, 6 and 12 months using the questionnaire from Green, Expert Dietician Evaluation of Gluten-Free Diet Adherence for Children. According to the Green measures, adherence is scored across five categories: Excellent, Good, Fair, Poor and Not gluten free [ 22 ]. Excellent and good are considered indicative of a patient following a GFD.…”

An Evaluation of Nutritional Status and Problems with Dietary Compliance in Polish Patients with Celiac Disease

“…Dietary adherence was assessed with the use of two validated questionnaires: (i) a GFD compliance questionnaire [20] and (ii) the Celiac Disease Adherence Test (CDAT) [21]. For pediatric patients, the questionnaires were filled by the parents or guardians, whereas older children actively participated in the process, which is common practice in research studies involving dietary recalls [22][23][24]. The results were used to assess the patients' attitudes to a GFD and discuss problems that could undermine dietary adherence.…”