Gluten-free diet adherence in adult coeliac disease: Exploring multiple perspectives
Background: Coeliac disease is an autoimmune disease triggered by an inappropriate immune response to dietary gluten. This condition affects around 1% of the population and can lead to serious health complications, including nutrient deficiencies, infertility, osteoporosis and cancer. Symptoms, such as diarrhoea, pain, fatigue and bloating, can be debilitating. The only treatment is a life-long gluten-free diet. Up to 58% of adult patients have sub-optimal adherence to a gluten-free diet, yet the reasons for this are poorly understood. The aim of this study was to gain a better understanding of the factors affecting adherence to a gluten-free diet in adult coeliac patients. Methods: Concept mapping is a participatory mixed method that involves generation of ideas through brainstorming. Ideas are prioritised and grouped for similarity by participants, producing visual concept maps that represent participants’ perceptions about what affects adherence to a gluten-free diet. Results: Seventy-three participants were recruited (34 adult coeliac patients; 21 adults who live with them (household members); and 18 healthcare professionals). Analysis revealed a concept map containing 13 thematic clusters: The high cost of gluten-free food was perceived to be the most important factor. Healthcare professionals perceived the availability of gluten-free sandwiches to be significantly less important than people with 3 coeliac disease and household members. Other factors included: knowledge and information about coeliac disease and the gluten-free diet; access to gluten-free food; motivation and support; and difficulties eating away from home. There was a high degree of consistency between the perceptions of the three stakeholder groups. Conclusions: This study identified a complex interplay of factors associated with adherence to a gluten-free diet and their relative importance. This study provides a better understanding of how to support adherence to a gluten free diet in adults with coeliac disease. This knowledge could be used to inform interventions to improve dietary adherence.
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