Adherence to a Gluten-free Diet in Celiac Disease
Adherence to a Gluten-free Diet in Celiac Disease
Background A strict gluten-free diet is the cornerstone of treatment for coeliac disease. Studies of gluten-free diet adherence have rarely used validated instruments. There is a paucity of data on long-term adherence to the gluten-free diet in the adult population.
Aims To determine the long-term adherence to the gluten-free diet and potential associated factors in a large coeliac disease referral centre population.
Methods We performed a mailed survey of adults with clinically, serologically and histologically confirmed coeliac disease diagnosed ≥5 years prior to survey. The previously validated Celiac Disease Adherence Test was used to determine adherence. Demographic, socio-economic and potentially associated factors were analysed with adherence as the outcome.
Results The response rate was 50.1% of 709 surveyed, the mean time on a gluten-free diet 9.9 ± 6.4 years. Adequate adherence (celiac disease adherence test score <13) was found in 75.5% of respondents. A higher level of education was associated with adequate adherence (P = 0.002) even after controlling for household income (P = 0.0220). Perceptions of cost, effectiveness of the gluten-free diet, knowledge of the gluten-free diet and self-effectiveness at following the gluten-free diet correlated with adherence scores (P < 0.001).
Conclusions Long-term adherence to a gluten-free diet was adequate in >75% of respondents. Perceived cost remains a barrier to adherence. Perceptions of effectiveness of gluten-free diet as well as its knowledge, are potential areas for intervention.
Coeliac disease (CeD) is a chronic, inflammatory, autoimmune disease of the small intestine induced by ingestion of proline-rich and glutamine-rich gluten proteins in wheat, rye and barley in genetically susceptible individuals. The estimated prevalence of CeD ranges from 1:70 to 1:200 based on antibody screening studies and confirmatory intestinal biopsy data from the USA, Canada, South America, Australia and most Western and Middle Eastern countries. Recent data indicate that the prevalence appears to be rising worldwide.
The cornerstone of recommended treatment for CeD is the strict, complete and lifelong elimination of gluten from the diet and nondietary sources. Clinical and histological remission through strict adherence to the gluten-free diet (GFD) has been associated with improvements in nutritional deficiencies, depression and infertility as well as a decrease in the risk of osteoporosis and gastrointestinal malignancies. Although the GFD is proven to be a safe and effective therapy, it is not ideal. The GFD is typically more expensive than a non-GFD, not readily available in many settings and often of suboptimal nutritional value. In addition, patients often report that the GFD is restrictive and difficult to follow especially when eating away from home. All of these factors can significantly impact adherence. In fact, in one recent study, patients with CeD reported that the burden of treatment with the GFD was similar or higher to that of type I diabetes mellitus.
A recent systematic review of factors associated with GFD adherence in adult patients with CeD found rates for strict adherence to range from 42% to 91% depending on population and study definitions of adherence. Interestingly, the review found no difference in adherence rates in screen- vs. symptom-detected coeliac patients.
There is a paucity of published studies addressing long-term GFD adherence, particularly in adult patients. Data from Europe and Latin America have investigated factors related to GFD adherence primarily in children, with mean duration on the GFD from 6 months to 9 years. No previous US study has investigated factors that govern long-term adherence (≥5 years) on a GFD. The goal of this survey study was to determine the factors that govern long-term adherence to the GFD in adult US patients with CeD using the validated Celiac Disease Adherence Test (CDAT) and Likert-like scale questions.
Abstract and Introduction
Abstract
Background A strict gluten-free diet is the cornerstone of treatment for coeliac disease. Studies of gluten-free diet adherence have rarely used validated instruments. There is a paucity of data on long-term adherence to the gluten-free diet in the adult population.
Aims To determine the long-term adherence to the gluten-free diet and potential associated factors in a large coeliac disease referral centre population.
Methods We performed a mailed survey of adults with clinically, serologically and histologically confirmed coeliac disease diagnosed ≥5 years prior to survey. The previously validated Celiac Disease Adherence Test was used to determine adherence. Demographic, socio-economic and potentially associated factors were analysed with adherence as the outcome.
Results The response rate was 50.1% of 709 surveyed, the mean time on a gluten-free diet 9.9 ± 6.4 years. Adequate adherence (celiac disease adherence test score <13) was found in 75.5% of respondents. A higher level of education was associated with adequate adherence (P = 0.002) even after controlling for household income (P = 0.0220). Perceptions of cost, effectiveness of the gluten-free diet, knowledge of the gluten-free diet and self-effectiveness at following the gluten-free diet correlated with adherence scores (P < 0.001).
Conclusions Long-term adherence to a gluten-free diet was adequate in >75% of respondents. Perceived cost remains a barrier to adherence. Perceptions of effectiveness of gluten-free diet as well as its knowledge, are potential areas for intervention.
Introduction
Coeliac disease (CeD) is a chronic, inflammatory, autoimmune disease of the small intestine induced by ingestion of proline-rich and glutamine-rich gluten proteins in wheat, rye and barley in genetically susceptible individuals. The estimated prevalence of CeD ranges from 1:70 to 1:200 based on antibody screening studies and confirmatory intestinal biopsy data from the USA, Canada, South America, Australia and most Western and Middle Eastern countries. Recent data indicate that the prevalence appears to be rising worldwide.
The cornerstone of recommended treatment for CeD is the strict, complete and lifelong elimination of gluten from the diet and nondietary sources. Clinical and histological remission through strict adherence to the gluten-free diet (GFD) has been associated with improvements in nutritional deficiencies, depression and infertility as well as a decrease in the risk of osteoporosis and gastrointestinal malignancies. Although the GFD is proven to be a safe and effective therapy, it is not ideal. The GFD is typically more expensive than a non-GFD, not readily available in many settings and often of suboptimal nutritional value. In addition, patients often report that the GFD is restrictive and difficult to follow especially when eating away from home. All of these factors can significantly impact adherence. In fact, in one recent study, patients with CeD reported that the burden of treatment with the GFD was similar or higher to that of type I diabetes mellitus.
A recent systematic review of factors associated with GFD adherence in adult patients with CeD found rates for strict adherence to range from 42% to 91% depending on population and study definitions of adherence. Interestingly, the review found no difference in adherence rates in screen- vs. symptom-detected coeliac patients.
There is a paucity of published studies addressing long-term GFD adherence, particularly in adult patients. Data from Europe and Latin America have investigated factors related to GFD adherence primarily in children, with mean duration on the GFD from 6 months to 9 years. No previous US study has investigated factors that govern long-term adherence (≥5 years) on a GFD. The goal of this survey study was to determine the factors that govern long-term adherence to the GFD in adult US patients with CeD using the validated Celiac Disease Adherence Test (CDAT) and Likert-like scale questions.
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