The design and delivery of a patient informed intervention to improve adherence to a gluten free diet in adults with coeliac disease

  • Humayun Muhammad

Student thesis: Doctoral Thesis


Coeliac Disease (CD) affects 1% of the UK population, with no cure, the only available treatment is strict adherence to a Gluten Free diet (GFD). It is estimated that 53% to 76% of patients are not adherent to a GFD and this may lead to variety of health related complications. The PhD comprised of three studies; 1, a quantitative exploration of dietary adherence and demographics of CD followed by 2, qualitative interviews to explore patients view in the design of an intervention to increase adherence to a GFD and 3, the design, delivery and evaluation of the intervention. PhD Aims To collect information about adherence to a GFD, causes behind low adherence in a mixed cohort of adults diagnosed with CD. Explore patient preference for a healthcare professional led intervention to promote gluten free dietary adherence in patients with coeliac disease. Evaluate telephonic clinic intervention in increasing adherence to a gluten free diet in patients with CD, not adhering to the GFD. Methods Patients diagnosed with histology confirmed CD were invited to participate. Study I, 375 adults with CD provided cross sectional data collected using validated CDAT and Butterworth questionnaires. Study II, patients with coeliac disease engaged in individual qualitative telephone interview to explore the acceptability interventions to promote GF dietary adherence. Study III, 125 patients (non-adherent intervention group =30) with CD completed baseline CDAT, DASS, CDQoL, GF knowledge questionnaires. The non-adherent group took part in a 1 hour telephonic clinic inclusive of CD and GFD knowledge and behaviour change. Both groups were followed up at three and six months. Results: In Study I Gluten free dietary adherence, CDAT score ranged from 7 to 30 with 61% of patients adhering to a GFD. There were no significant differences between GFD adherence based on ethnicity, age, nor gender. Membership of Coeliac UK, affordability of gluten free foods and understanding food labelling were significant factors in GFD adherence. In study II, Caucasians (n=28) and South Asians (n=9) (M=8, F=29) were interviewed, 30 were considered non-adherent to the GFD. Participants perceived telephone clinics as easy, flexible and convenient, it was the most favoured intervention. Thereafter, in study III, there was a significant improvement in GFD adherence, evidenced by change in CDAT score in non-adherent intervention group (n=30) at three (13.20±1.6) and six months (13.23±1.6) post intervention compared with baseline values (15.7± 0.83, p<0.01). Significant increase in knowledge score at three month post intervention (15.07±1.17) was also observed as compared to baseline (13.27±1.48, p<0.01), whereas health related QoL remained similar. Discussion and conclusion: Patient dietary adherence was 60% in study I as defined by no gluten (except inadvertent intake), is close to the reported value (62%) by Butterworth et al (2004). The study was graded as one of the strongest evidence by the government of UK in relation to consultation prescription of gluten free diet and cited in several recent papers. Study II has given a unique view of a multi-ethnic population to inform interventions aimed at increasing adherence to a GFD. Study III indicates that telephonic intervention can increase in both adherence as well as knowledge scores in adults with coeliac disease who were not adhering to the GFD. Data from this PhD has influenced government prescribing consultation and offers a viable healthcare professional led intervention for clinicians and dietitians.
Date of Award24 Jun 2019
Original languageEnglish
Awarding Institution
  • University of Roehampton
SponsorsDr Schär, UK Ltd.
SupervisorYvonne Jeanes (Supervisor) & Sue Reeves (Supervisor)


  • Coeliac disease
  • Gluten free diet
  • Adherence
  • Intervention

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