A gluten-free diet as a normal way of life: Adherence to gluten-free diet among people with coeliac disease and the role of specialist follow up

Abstract

Strict adherence to a gluten-free diet is the only known treatment for coeliac disease and is believed to reduce the risk of serious complications such as malignancy. Regular follow up has been associated with better dietary adherence in this group. This thesis examines adherence to a gluten-free diet among people with coeliac disease with a particular emphasis on specialist follow up. The research presented in the thesis comprises a qualitative study, conducted using a grounded theory method, and a questionnaire study. The questionnaire focussed particularly on specialist follow up and aimed to compare people who attended follow up with those who had defaulted. Data for the qualitative study was collected by means of semi-structured interviews. Thirty interviews were carried out. Interview transcripts were analysed and the findings used to develop a model of dietary adherence. The experience of coeliac disease and of implementing a gluten-free diet was seen to be a social one. At the centre of the model was the concept of dietary adherence as the incorporation of the gluten-free diet into normal life. The model illustrates the factors which were found to facilitate or inhibit the adoption of a strict gluten-free diet as part of normal life. Findings from the qualitative study were used to inform a postal questionnaire. Three hundred and four questionnaires were distributed and 214 returned giving a response rate of 70%. A higher response rate (78%) was obtained from regular clinic attenders than non-attenders (43%). Non-attenders (n=29) were less likely than attenders (n=185) to report their needs had been met at their out-patient appointments. This suggests that a service which better meets the needs of this group may result in better attendance and this may in turn improve dietary adherence and possibly influence long term health. This research suggests a number of ways in which health professionals may better support people with coeliac disease. These include understanding the social aspects of coeliac disease, providing practical and factual information that is useful to the individual and allowing adequate time for patients to discuss their concerns.