Setting up a dietitian led coeliac clinic

Following a life-long gluten-freeWhen a food has less than 20 parts per million (ppm) of gluten so it is safe for people with coeliac disease to eat. diet is a major task. Compliance is variable, ranging from 45-87% (1,2). Ongoing dietetic support is essential to assess and review nutritional issues or possible nutritional deficiencies, as well as promoting an overall balanced diet (for example, adequate calcium and fibre intake). 

It is essential that children are monitored to ensure that growth and development are within the normal range.

Evidence shows that patients with coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself. 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. Patients may have additional medical conditions, such as diabetes, which also require dietetic input. 

It is important that the dietitianAn expert in food and nutrition. is able to adapt dietary advice to meet an individual's needs on an ongoing basis.

What do management guidelines recommend for follow-up?

There are a number of different guidelines on the management of coeliac disease:

• 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)
• the Primary Care Society for Gastroenterology (PCSGThe Primary Care Society for Gastroenterology is a membership organisations for gastroenterologists who work in primary care. It provides input on commissioning or clinical governance from a primary care perspective.) management guidelines, which are based on the BSGBritish Society of Gastroenterology - an organisation focused on the promotion of gastroenterology within the United Kingdom, with a membership drawn from physicians, surgeons, pathologists, radiologists, scientists, nurses, dietitians, and others interested in the field. The BSG is a registered charity. guidelines, recommend that after initial dietetic assessment patients are reviewed after three and six 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 survey of dietetic services across the UK, carried out by Coeliac UK, found that the current level of dietetic provisions is around a third of what is needed, according to BSG guidelines to provide basic support and annual review (7). 

Does dietitian intervention improve patient care in coeliac disease?

Evidence shows that compliance to a glutenA protein that is found in the cereals wheat, barley and rye. -free diet is improved by regular dietetic intervention (8, 9), and patients prefer to see a dietitian for long term follow up, with a doctor available if needed (10). One paper concludes that serology markers cannot replace a trained dietitian's evaluation in assessment of adherence to the gluten-free diet (11).

Although guidelines on the management of patients with coeliac disease in the UK are not always consistent, 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 (HCPs) taking the lead. To run a successful clinic it is essential that the HCP has 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

It is 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 scheme objectives and provide evidence that the clinic is meeting demand. 

2. If the 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 different options available for your clinic. One option would be to maintain the current service. Outline 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 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 is 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 estimate how many patients you will see, how long this will take and what funding is required. Allow extra funding for ongoing professional development (for example, to attend coeliac disease 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 NICE guideline on the recognition and assessment of coeliac disease, published in 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 (for example, 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 starts it is essential to have an agreed protocol with all HCPs that are involved in the care of patients with coeliac disease in your Trust.  Criteria for referral between members of the healthcare team needs to be clear.

The protocol should provide details on:

• how the clinic will be run (for example, 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
• what will be covered at each annual review appointment (for example, symptoms, blood tests, Coeliac UK membershipIf you have been diagnosed with coeliac disease then you can become a Member of Coeliac UK. , dietary compliance, DEXA Scans)
• what information must be given.

If you are an HCP extending your role, then agreement with the gastroenterologists regarding management of abnormal results or clinical concerns is essential.

Professional insurance

The British Dietetic Association (BDABritish Dietetic Association - the professional association for dietitians in the UK.) currently recognises that running a dietitian-led coeliac clinic is an extended role and it is 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 adequacy of the diet.

References

1. Bardella MT, Molteni N, Prampolini L, Giunta AM, Baldassarri AR, Morganti D, Bianchi PA. (1994). Need for follow up in celiac disease. Archives of Disease in Childhood 70: 211-213

2.  Ljungman G & Myrdal U. (1993). Compliance in teenagers with coeliac disease - a Swedish follow-up study. Acta Paediatrica 82: 235-238

3. Dickey W & Kearney N. (2006). Overweight in celiac disease: prevalence, clinical characteristics, and effect of a gluten-free diet. American Journal of Gastroenterology 101: 2356-9.

4. Clinical Resource Efficiency Support Team (CREST) (Northern Ireland). (2006) Guidelines for the diagnosis and management of coeliac disease in adults.

5. Primary Care Society for Gastroenterology. (2006). The management of adults with coeliac disease in primary care. [Accessed on internet]. Available at www.pcsg.org.uk

6. British Society of Gastroenterology (BSG). (2002). Guidelines for the Management of patients with coeliac disease. [Accessed on internet] Available at: www.bsg.org.uk.

7. Nelson, M, Mendoza N, McGough N. (2007). A survey of provision of dietetic services for coeliac disease in the UK . Journal of Human Nutrition and Dietetics 20: 403-411

8. Pietzak MM. (2005). Follow-up of patients with celiac disease: Achieving compliance with treatment. Gastroenterology. 128, S135-S141

9. Wylie C, Geldart S & Winwood P. (2005). Dietitian- led Coeliac Clinic: A successful change in working practice in modern healthcare. Gastroenterology Today. 15(1):11-12

10. Bebb JR, Lawson A, Knight T, Long RG. (2006). Long-term follow up of coeliac disease - what do coeliac patients want? Alimentary Pharmacology and Therapeutics 23:827-831

11. Leffler D, George J, Dennis M, Cook EF, Schuppan D, Kelly CP. (2007). A prospective comparative study of five measures of gluten-free diet adherence in adults with CD. Alimentary Pharmacology and Therapeutics 26, 1227-1235

12 Bingley PJ, Williams AJ, Norcross AJ, Unsworth DJ, Lock RJ, Ness AR, Jones RW. (2004) Avon longitudinal study of parents and children study team. BMJ. 328: 322-3.

13. West J, Logan RFA, Hill PG, Lloyd A, Lewis S, Hubbard R, Reader R, Holmes GKT, Khaw KT. (2003). Seroprevalence, correlates and characteristics of undetected coeliac disease in England. Gut. 52: 960-965.

14. Van Heel D & West J. (2006). Recent advances in coeliac disease. Gut. 55: 1037-46.