Outcomes in coeliac disease: patients’ views on what they want to achieve when seeing a dietitian

Abstract

Background: Coeliac disease (CD) is managed by life-long adherence to a gluten free (GF) diet which many patients find challenging. Outcome measures in CD are usually based on a medical model which includes measuring serum IgA tissue transglutaminase and IgA endomysial antibodies and repeat biopsies1. Complementing these, but not explicit in outcome measures, is patient involvement through shared decision-making2 which is central to behaviour change skills used by dietitians. Dietitians have the potential to facilitate GF adherence but patients with CD describe receiving mixed support from dietitians3,4 The aim of this qualitative study was to explore the preferences for diet and nutrition-related outcomes measures of CD patients and their family or carers. Methods: Adult participants with CD or adult carers of children with CD were invited through Coeliac UK and local coeliac groups by web advert and email. Ethical approval was obtained and participants gave written consent before taking part in a telephone or face-to-face interview lasting 20-45 minutes. A semi-structured topic guide, developed with patient input, was used and interviews were audio-recorded and then transcribed and analysed using a framework method5 to develop themes. Data collection continued until saturation was reached. Results: Interviews were undertaken with 19 adult patients (male n=2; female n=17) and five parents of children with CD via telephone (n=23) or face-to-face (n=1). Three main themes relating to outcome measures emerged: information or knowledge gained, resources provided and the experience of the consultation. (1) Participants wanted a range of information that was specific to their lifestyle and time since diagnosis, focussed on food containing gluten, practical issues and precise information about prescribable items. Information about long-term health including unwanted weight gain and the ‘danger of [high levels of] sugar in GF products’ was also considered important. (2) Resources included printed information, GF samples and direction to Coeliac UK, local groups and online support. One satisfied participant was ‘bowled over by the level of detail’ in the diet sheet she received. (3) Some participants’ experience was impacted greatly by the process of their consultation, including the extent of the dietitian’s CD expertise, consistency of dietitian seen and the frequency and length of appointments. Practical monitoring, e.g. body weight, bone health and antibody measurements, were mentioned but were not described as being of primary concern in most dietetic consultations. Discussion: The range of responses reflected the different needs of CD patients at various times from diagnosis, with different levels of existing knowledge and, for some, complex co-morbidities. This indicates the need for dietitians to identify what outcomes individual patients want to achieve at each consultation. The need for flexible outcomes and how these might be measured raises a challenge for healthcare commissioners. The concerns about long-term health and limited ‘healthy’ GF products have received little attention in previous studies1,4 and merit further investigation. Conclusion: The outcome preferences described by CD patients and carers focussed primarily on the information gained, resources given and the experience of the consultation. References 1. Silvester, J.A., Weiten, D., Graff, L.A., Walker, J.R. & Duerksen, D.R. (2015) Living gluten-free: adherence, knowledge, lifestyle adaptations and feelings towards a gluten-free diet. J. Hum. Nutr. Diet. doi: 10.1111/jhn.12316. 2. NICE (2015) Patient experience in adult NHS services: essential requirements of care. Retrieved 11 October from http://pathways.nice.org.uk/pathways/patient-experience-in-adult-nhs-services/patient-experience-in-adult-nhs-services-overview 3. NICE (2015) Coeliac disease: recognition, assessment and management of coeliac disease. NICE Guideline NG20. Retrieved 11 October 2015 from http://www.nice.org.uk/guidance/ng20 4. Rose, C. & Howard, R. (2014) Living with coeliac disease: a grounded theory study. J. Hum. Nutr. Diet. 27, 30-40. 5. Pope C, Mays N. Qualitative research in healthcare, 3rd edn. London: Wiley-Blackwell (BMJ Books), 2006.