Setting up a dietitian led coeliac clinic
Why are dietitians important in managing coeliac disease?
A gluten-free diet forms the complete treatment for coeliac disease. Diet therapy is therefore key in managing patients with the condition.
Following a life-long gluten-free diet is a major undertaking. Compliance is variable, ranging from 45-87% (1,2). A dietitian is ideally placed to provide support and advice on individual nutritional requirements.
Ongoing dietetic support is essential to assess and review nutritional issues or possible nutritional deficiencies, as well as promoting an overall balanced diet (e.g. adequate calcium and fibre intake).
It is essential that children are monitored to ensure that growth and development are within the normal range.
Patients may have additional medical conditions, such as diabetes, which also require dietetic input.
Evidence shows that patients with coeliac disease can be of normal weight or overweight at diagnosis. In addition to this weight gain after diagnosis is common (3) and may contribute to morbidity in the long term.
Therefore it is essential that the dietitian is able to adapt dietary advice to meet an individual's needs on an ongoing basis.
What do management guidelines recommend for follow-up?
The Clinical Resource Efficiency Support Team (CREST) guidelines for Northern Ireland advise that patients with coeliac disease need to be given high priority, with their first dietetic consultation within two weeks of diagnosis (4). After initial dietetic assessment, the Primary Care Society for Gastroenterology (PCSG) management guidelines, which are based on the BSG guidelines, recommend that patients are reviewed after 3 and 6 months and thereafter annually if otherwise well (5). The British Society for Gastroenterology (BSG) guidelines recommend regular follow-up at six to twelve month intervals (6).
A nationwide Coeliac UK survey of dietetic services across the UK found that the current level of dietetic provisions is in the region of a third of what is required according to BSG guidelines to provide basic support and annual review (7).
Does dietitian intervention improve patient care in coeliac disease?
There is evidence which shows that compliance to gluten-free diet is improved by regular dietetic intervention (8, 9), and that patients prefer to see a dietitian for long term follow up, with a doctor available if needed (10). A recent paper concludes that serology markers cannot replace a trained dietitian's evaluation in assessment of adherence to the gluten-free diet (11).
Although management of patients with coeliac disease in the UK is not always consistent with recommendations, dietitian-led coeliac clinics are evolving as a way forward in the management of patients with coeliac disease.
Claire Stuckey (nee Wylie), dietitian and one of Coeliac UK's Health Advisory Council Associates Network has developed a dietitian led coeliac clinic and has very kindly provided the following information.
Dietitian led coeliac clinics: the process
Coeliac review clinics are taking place in both primary and secondary care, with different healthcare professionals taking the lead. The key ingredient for running a successful coeliac clinic is that it is run by a healthcare professional with an interest in coeliac disease and an expert knowledge of how to manage the gluten-free diet. Communication with other members of the healthcare team is essential
The following provides a basic guide to setting up and running a coeliac review clinic.
Business plan
Its important to develop a business plan. You need to consult with your local trust to make sure that you provide all the necessary information to gain funding.
1. Describe the proposed scheme, outline the scheme objectives and provide evidence that shows that meeting needs.
2. If your overall objective is to improve and standardise healthcare for patients with coeliac disease within your NHS Trust, against national recommendations, your specific objective could include:
- To provide an annual review of clinical progress and provide regular monitoring by a dietitian
- To improve the education and support of patients with coeliac disease and provide up to date information for different stages of life.
- To continuously audit the service to assess the success of the clinic and healthcare requirements of the patients.
3. Undertake an option appraisal
Look at all the different options available for your clinic. One option would be to maintain the current service. Outline what will be the potential problems of making no change to the current service and the guidelines that are available recommending regular review of patients with coeliac disease.
4. Outline what will happen in the project
This should be a summary of your protocol. Outline who will be responsible for what and how frequent follow-up will be.
5. Funding requirements
Obtaining funding to run a coeliac clinic can often be challenging. Estimate how much funding you will need to run the clinic. A good starting point is to estimate how many patients with coeliac disease there will be in your population.
Although it's estimated that 1 in 100 people have coeliac disease (12,13) only 1 in 8 cases are medically-diagnosed (14).
You can use these figures to base an estimate of how many patients you will be seeing, how long this will take and what funding you will need. Allow extra funding for your ongoing professional development (e.g. to attend coeliac study days). It is essential to have the support of the gastroenterology department in order to help promote the service as beneficial.
6. Likely future demand
Provide an indication of whether the demand for a coeliac clinic is likely to increase, decrease or stay stable based on current literature.
You can refer to the proposed NICE guidelines on diagnosis of coeliac disease (scheduled for May 2009) as a potential tool to increase diagnosis rates in the future.
7. Benefits of project
Outline any evidence available for benefits of reviewing patients with coeliac disease on a regular basis, using examples of specific improved patient outcomes (e.g. compliance to the gluten-free diet, prevention of long term complications) or potential financial implications/benefits for the NHS Trust concerned.
A business plan should include current, relevant references.
Protocols
Before the clinic commences it is essential to have an agreed protocol with all healthcare professionals that are involved in the care of patients with coeliac disease in your Trust. Criteria for referral between members of the healthcare team need to be clear.
The protocol should detail how the clinic will be run (e.g. what is the referral criteria), what investigations will be arranged by whom and when, who will act upon results of investigations and how this will be done. Also detail what will be covered at each annual review appointment (e.g. symptoms, blood tests, membership of Coeliac UK, dietary compliance, DEXA Scans etc) and what information must be given.
If you are a healthcare professional extending your role then agreement with the gastroenterologists regarding management of abnormal results or clinical concerns is essential.
Professional insurance
The British Dietetic Association (BDA) currently recognises that running a dietitian-led coeliac clinic is an extended role. It is therefore covered by your insurance as a Member of the BDA with no extra charge.
Audit
Audit is essential to monitor the effectiveness of the clinic and to help obtain ongoing funding. Areas that could be audited are clinic attendance rates, identification of previously unrecognised clinical problems, changes in compliance with improved follow up and improvements in nutritional completeness of diet.
References
1. Bardella MT, Molteni N, Prampolini L, Giunta AM, Baldassarri AR, Morganti D, Bianchi PA. Need for follow up in celiac disease. Arch Dis Child 1994; 70: 211-213
2. Ljungman G, Myrdal. Compliance in teenagers with coeliac disease - a Swedish follow-up study. Acta Paediatr 1993; 82: 235-238
3. Dickey W and Kearney N. Overweight in celiac disease: prevalence, clinical characteristics, and effect of a gluten-free diet. Am J Gastrol 2006; 101: 2356-9.
4.Clinical Resource Efficiency Support Team (CREST) (Northern Ireland). Guidelines for the diagnosis and management of coeliac disease in adults. [Accessed on internet] 2006 Available at: www.crestni.org.uk.
5. Primary Care Society for Gastroenterology. The management of adults with coeliac disease in primary care. [Accessed on internet] 2006. Available at www.pcsg.org.uk
6. British Society of Gastroenterology (BSG) Guidelines for the Management of patients with coeliac disease. [Accessed on internet] 2002 Available at: www.bsg.org.uk.
7. Nelson, M, Mendoza N and McGough N. A survey of provision of dietetic services for coeliac disease in the UK . J Hum Nutr Diet 2007; 20:403-411
8. Pietzak MM Follow-up of patients with celiac disease: Achieving compliance with treatment. Gastroenterology 2005 128, S135-S141
9. Wylie C, Geldart S & Winwood P Dietitian- led Coeliac Clinic: A successful change in working practice in modern healthcare. Gastroenterology Today 2005;15(1):11-12
10. Bebb JR Lawson A, Knight T, Long RG.; Long-term follow up of coeliac disease - what do coeliac patients want? Aliment Pharmacol Ther. 2006 23:827-831
11. Leffler D, George J, Dennis M, Cook E, Schuppan, Kelly C. A prospective comparative study of five measures of gluten-free diet adherence in adults with CD APT 2007; 26, 1227-1235
12 Bingley PJ, Williams AJ, Norcross AJ, Unsworth DJ, Lock RJ, Ness AR et al. Avon longitudinal study of parents and children study team. BMJ 2004; 328: 322-3.
13. West J, Logan, RFA, Hill, PG, Lloyd, A, Lewis, S and Hubbard, R. Seroprevalence, correlates and characteristics of undetected coeliac disease in England. Gut 2003, 52: 960-965.
14. van Heel D and West J. Recent advances in coeliac disease. Gut 2006; 55: 1037-46.
