Untreated celiac disease has been linked to long-term health complications, yet research has shown that gluten-free diet adherence is widely variable. To determine if educational materials could have a positive effect on people’s compliance to the gluten-free diet, a group of Australian researchers developed an online resource/educational tool called “Bread n’ Butter…Gluten-free of Course!” The authors note that the tool is the first resource specifically designed to improve gluten-free diet adherence in people with celiac disease, and that their study is the first to confirm the “knowledge-behavior” gap within celiac disease and adherence to the gluten-free diet.
A previous study found interactive computer programs to be effective in improving knowledge of the gluten-free diet. Another study found that a problem-based learning program helped to improve the mental health of women with celiac disease. Neither study, however, measured gluten-free diet adherence, so it was not clear if the improvement in knowledge would lead to an improvement in diet adherence. Therefore, understanding an online resource’s effect on improvement in dietary adherence (along with gluten-free diet knowledge, quality of life and psychological symptoms) was a primary of goal of this Australian study.
189 people with biopsy-confirmed celiac disease participated in the study. 101 participants were randomly selected to immediately participate in the online educational program, while 88 were put on a “waitlist” to receive access to the tool in 8 weeks. This was done in order to simulate an “intervention” and “control” group. Both groups were asked to complete the Celiac Dietary Adherence Test (CDAT), a validated questionnaire used in research and clinic settings to measure gluten-free diet compliance, and the World Health Organization Quality of Life Assessment BREF, an international cross-culturally comparable quality of life assessment instrument used to measure overall quality of life, physical and psychological quality of life. Completion of the CDAT allowed researchers to categorize participants based on their level of dietary adherence: Excellent/Very Good, Moderate, and Fair-to-Poor.
While the control group remained on the waitlist, the intervention group utilized the tool, which consisted of six weekly online courses: Introduction and Information About Celiac Disease and the Gluten-Free Diet, Managing the Challenges of the Gluten-Free Diet, Communication Around the Gluten-Free Diet, Thinking About the Gluten-Free Diet, Balancing Life with Your Gluten-Free Diet and Bringing It All Together. The courses each took 30 minutes to complete and included educational and behavioral change components. Automated emails and text messages were used to communicate with those participants undergoing the intervention.
Following the completion of the courses, the intervention group completed the CDAT and the World Health Organization Quality of Life Assessment BREF both at post-intervention and 3-month follow-up. In comparison with the baseline results, the post-intervention scores of participants who completed the online tool showed improved gluten-free diet adherence, while the waitlist study group did not change.
To demonstrate clinical significance of an improvement in diet adherence, it was important for researchers to analyze a subsample of participants whose adherence was scored as inadequate (moderate or fair-to-poor) at baseline and for whom had completed the post-surveys. Of those who completed the Bread n’ Butter….Gluten-free Of Course! program and for whom post-data was available, 65.4% of participants in the intervention group improved adherence, with 14/19 moving from Moderate to Excellent/Very Good. Of those in the waitlist control group, 55.2% remained as having inadequate adherence.
Overall, when compared to the control group, people who completed the program had significant improvements in the gluten-free diet both immediately after completing the course and at the three-month follow-up. Because even a small amount of gluten ingestion in people with celiac disease will cause damage to the villi in the small intestine, the researchers concluded that Bread n’ Butter… Gluten-free of Course! is promising in helping people who have difficulties adhering to the diet.
Q&A with Researcher Kirby Sainsbury, PhD candidate:
Q. Does the research team and/or The Celiac Society of New South Wales Australia plan to continue work in this area?
A. “Yes, we are currently looking at revisions to the program based on the quantitative results and qualitative feedback received from participants. We hope to make an updated version of the program available to members of The Celiac Society in the future.”
Q. Can we expect a program like this to be formally implemented by the Society in the future?
A. We are currently looking at several options for how the program may be used clinically (outside of the research context), including translating the program into a smart phone app, publishing a summary brochure, and tailoring parts of the program depending on the specific needs of the individual.
Q. Can you please comment on the following statement from your article, “improvements in knowledge are not sufficient to produce improvements in adherence …this is the first study to confirm this gap specifically in the celiac disease population.” How do you see this finding changing the future of celiac disease patient education?
A. Recently within the health psychology field there has been a strong push towards understanding the mechanisms underlying behaviour change – that is, understanding how interventions work over and above the demonstration of effectiveness. Without an understanding of the active ingredients of an intervention, intervention effects are less likely to be replicable and the ability to develop more effective interventions based on an analysis of the most successful components is limited. Statistically this is achieved using mediation analyses. In our study it was found that although both gluten-free diet knowledge and adherence improved, the change in knowledge did not mediate the effect of the intervention on adherence change. The knowledge-behaviour gap therefore refers to the observation that even with adequate knowledge a proportion of people will fail to translate knowledge into behaviour change, in the same way that having an intention does not always lead to behaviour change (the intention-behaviour gap). The knowledge-behaviour gap is not a new concept within health psychology – it has been commonly found that information provision alone is not an effective way of changing people’s behaviour. Despite this, much of the support provided by celiac societies and dietitians involves providing information. This is a very necessary starting point as without adequate knowledge behaviour change will not be possible and the various celiac societies do an amazing job at this – indeed in many countries, including Australia, they are the only source of support for people with celiac disease (excluding general practitioners , dietitians, and gastroenterologists who are typically involved around the time of diagnosis). As our study demonstrated, however, just teaching people how to read labels and identify gluten-free products is not enough. Instead, what is needed is a more active approach to encouraging the development of adaptive coping skills that enable individuals with celiac disease to communicate their dietary needs to the people preparing their food (e.g., restaurants), problem solving how to maintain the gluten-free diet when external circumstances make this difficult, and managing the emotional reactions triggered by the restrictions and necessity of maintaining a strict lifelong diet. The celiac societies certainly play a very important role in this pursuit and we hope that the Bread n’ Butter… Gluten-free of Course! program can also become part of routine care for people with celiac disease to further support the development of such skills.
Q. Why do you suspect there were no changes in diet adherence and knowledge between the post-intervention and 3-month follow-up?
A. The fact that there was no change in knowledge or adherence between immediate post-intervention and 3-month follow-up indicates that the improvements were maintained beyond the period of active engagement with the intervention. This is in contrast to the previous intervention targeting knowledge alone where the benefits of participation were lost after only 3 weeks (Meyer et al., 2004). It is likely that the more comprehensive nature of the behaviour change techniques employed here and the fact that all included strategies have a strong evidence base in promoting behaviour change meant that the improvements were maintained. The focus on active coping skills and application to real life practical situations also likely contributed to the effect. Since this paper was published in March 2013, we have also obtained 6-month follow-up data from participants who completed the program and the improvements in knowledge and adherence were similarly maintained. This strongly suggests that the program does have the power to prompt long-lasting behaviour change, with potential positive implications for the reduction of health long-term complications associated with a poorly managed gluten-free diet.