The number of cases of Coeliac Disease (CD) is likely to continue to rise over the next ten years. A gluten-free diet (GFD) remains the cornerstone of treatment for patients with CD but there is a wide variation in provision of dietary consultation services for patients diagnosed with CD. One potentially cost effective option could be a Dietetic led Coeliac Group Clinic service.
The protocol for the Coeliac group clinic service detailed in this example draws from the recommendations in NICE guideline NG20, particularly steps taken by laboratories where serological tests are requested by healthcare professionals (Recommendation 1.2.2).
The protocol also demonstrates implementation of Recommendation 1.6.2 which advises health care professionals to give people with coeliac disease and their families, sources of information and signposting to specialist groups and dieticians.
Aims and objectives
One of the key factors relating to adherence to a GFD is dietetic input.21,22 Optimally, clinics should have gastrointestinal and dietetic expertise. Indeed when patients with coeliac disease were surveyed about their views they indicated that a dietetic led clinic with access to a gastroenterologist who has an interest in their condition was the service which they had a preference for.23, 25, 26.
However, there is a wide variation in provision of dietary consultation services for patients diagnosed with CD in the world. One survey indicates that provision of dietetic support is inadequate and estimated to be a 1/3rd of what is currently recommended in British Society of Gastroenterology gudelines.24 A GFD is the cornerstone of treatment for these patients yet at the time of their initial diagnosis patients may wait for four-six weeks (or longer) before their initial dietetic consultation. Patient feedback suggests that this is unacceptably long. Patients may not receive consistent or sufficient information regarding their condition or given adequate support or follow-up9.
Given the financial restraints of providing such a clinical service, one potentially cost effective option could be a dietetic led Coeliac Group Clinic (CGC) service.27 This is particularly viable for the ‘first’ or ‘new patient’ attendance as the information given at this time is frequently standardised. Dietitians perceive that follow up appointments are when most patients require a more personalised service tailored to their individual needs.28 Furthermore a group clinic may have additional benefits should patients form support networks or share their experiences.
The main aim of the initiative was:
1) To establish a CGC to educate newly diagnosed patients
2) To evaluate the effectiveness of the CGC
To achieve this aim we completed a feasibility study of coeliac group clinics and assessed the following outcomes:
- Calculating potential cost saving.
- Patient expectations of group clinics.
- Patient satisfaction.
- Patient learning outcomes.
Reasons for implementing your project
A recent meta-analysis from the University of Nottingham demonstrated a fourfold increase in the rate of diagnosed cases of CD in the UK over the past two decades.4 The increasing recognition of this disease has been attributed to novel serological assays (Tissue Transglutaminse tTG, Endomysial IgA) and the realisation that patients do not always have gastrointestinal symptoms, and may present insidiously, for example with anaemia, folate deficiency, osteoporosis, or neurological symptoms.5-8 However despite this progress the ratio of known to unknown CD remains at 1 to 5 indicating that 75% of people with CD remain undiagnosed.4
Coeliac UK has predicted that the number of cases of CD is likely to continue to rise. Over the next 10 years this could increase from 250,000 (who are currently diagnosed) to an estimated 700,000-890,000.9 This exponential rise in new cases will pose continuity of care and service delivery problems for the National Health Service (NHS).
Careful life-long adherence to a GFD is advocated for patients with CD in order to reduce the risk of complications such as osteoporosis and gastrointestinal malignancy (for example, lymphoma).10 However adherence to a GFD can be restrictive and CD patients may actually consider that the limiting nature of the diet impairs the quality of their life.11-18 Indeed the literature suggests a very wide variability of 42-91% in patients’ ability to adhere to a lifelong strict GFD.19-21
How did you implement the project
We developed a 90 minute interactive educational package, based on Coeliac UK and local guidance for educating patients with newly diagnosed coeliac disease. All sessions were led by a dietitian. This resulted in the coeliac group clinic protocol.
This project was fully supported by the gastroenterology department. The only costs incurred were the dietetic time to develop the teaching materials and extra clerical support required to run the clinics.
Patient evaluations, perhaps surprisingly, suggested that for a 1/3 of patients the most common expectation of a CGC was an explanation of the general mechanisms of CD, more so then a discussion of the GFD! Though this could be due to a strong co-association of the condition (coeliac disease) with its treatment (a gluten free diet), such that any discussion of former would inherently involve an explanation of the latter. However from this our resources included a description of the process of villous atrophy and how serology/histopathology is used in diagnosis.
All other patient expectations were more generally related to some aspect the GFD and specifically to understanding food labelling, avoiding cross contamination and the process of obtaining GF foods on prescription. Evaluations showed patients expectations of CGC were met 98% of the time, 98% of patients felt they had an improved understanding of CD and had acquired new knowledge. 100% felt they would recommend a CGC to others with newly diagnosed CD.
The dietetic time saving associated with group education is summarised in tables 1 and 2 of the supporting material. Over the first year, 68 newly diagnosed patients were seem in the CGCs. Once time for resource development was taken into account, we estimated that 41 hours of dietetic time was saved. As the clinic becomes more established it is hoped that the time saved can be increased as more patients are referred to the group approach.
Key learning points
From previous research in patient cohorts receiving treatment for diabetes and obesity, it has been demonstrated that a group clinic approach can deliver the education needs of these clients groups, 31-33 with the additional benefit of providing peer support. Group education in the coeliac population appear to have similar benefits. The evaluations and data collected thus far suggest not only do CGCs meet patients expectations, but also improve their knowledge of their condition and reduce the dietetic time involved in the delivery of education and support in this patient group.
It is vital to have support of all the stakeholders involved in the care of patients with CD. Links between the gastroenterologists and dietitians are particularly essential in the development of group clinics to ensure that patients can be triaged back for further medical review if required.
It is equally important to safeguard enough dietetic time for the resources for group clinics to be developed.
However, initial time allocations were generous with 1:1 appointments being allocated 30 minutes. The dietetic team found that 20 minutes was enough to cover the necessary content.
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