IN COELIAC DISEASE, an autoimmune condition, the mucosa of the small intestine is damaged by gluten. The damage to the small intestine results in a reduced ability to digest and absorb food and causes malabsorption of essential nutrients such as vitamins, iron, folic acid and calcium. The prevalence of coeliac disease is 0.5-1%¹ in international population studies. It has the potential to lead to complications such as reduced bone mineral density, malignancy and splenic atrophy. The only treatment for coeliac disease is a strict, life-long gluten-free diet. Effective management therefore relies on regular follow-up of patients to ensure strict adherence.^2,3,4

Methods

A meeting was held in our practice in early September 2014 with the doctors and the practice nurse. We agreed on a protocol for the conduct of a practice audit. We decided to carry out an audit of adult patients diagnosed with coeliac disease, as it has been shown in the literature that patient adherence to a gluten-free diet is poor; ranging from 45-87%.^5,6 It has also been shown that regular follow-up visits to monitor adherence by a health professional has a positive impact and helps the patient maintain a gluten-free diet.⁷ Regular follow-up is also an opportunity to provide patient-centred care and reduce the complication rate associated with coeliac disease.

The standards used and the measurements assessed in the audit were based on the UK Primary Care Society for Gastroenterology (PCSG) Guideline, ‘The Management of Adults with Coeliac Disease in Primary Care.’⁸ This guideline recommends an annual review and advises that certain parameters be measured at each of these reviews. An annual review template was devised within the practice based on this guideline. This template was then incorporated onto computer software to record the parameters of the annual review. The parameters measured included body mass index (BMI), symptom review, perform annual blood tests (including tissue transglutaminase antibodies (anti-tTG), full blood count, folate, ferritin, vitamin B12, albumin, alkaline phosphatase and calcium), DXA scanning, lifestyle advice (including discussion regarding exercise, smoking cessation, alcohol and gluten-free diet), advice on calcium intake, advice regarding recommended vaccinations and lastly, to discuss familial risk of coeliac disease, advising of testing for first degree relatives. 

Following a computer database search using the practice management software ‘SOCRATES’, 14 adult patients were identified as having a diagnosis of coeliac disease. The initial data collection of the above parameters was carried out on October 1, 2014. Data was collected for each patient in regard to their coeliac disease care in the previous year (from October 1, 2013 to October 1, 2014). An invitation letter was sent to all 14 patients on October 6, inviting them to attend the practice for an annual review. The letter also included a brief description of the audit and details of the annual review content. We held a follow-up practice meeting on November 14, to review progress to date on the implementation of the agreed guideline. A reminder letter to attend the practice for annual review was sent to patients on November 17, six weeks following the initial invitation letter. The re-audit cycle was carried out on January 5, 2015, three months after the first data collection. 

Results

Prior to the audit, four patients had had a formal annual review in regard to coeliac disease management. All four of these patients had their annual review carried out in a gastroenterology clinic in the hospital setting. Some of the parameters recommended by the guideline were not documented in the annual review, such as a record of the patient’s BMI, and specific lifestyle and calcium intake advice.

Following the invite letters, eight patients attended the practice for their annual assessment. Four patients had attended a gastroenterology/coeliac disease clinic in the previous year. At the time of the re-audit, 10-14 patients had a full review, either in the practice or in the hospital clinic, with two patients having attended both the practice and the hospital clinic for an assessment.

Demographics

There were a total of 14 patients in the practice with a documented diagnosis of coeliac disease, seven males and seven females. The age range of the patients was 28 to 72 years, with a mean age of 46 years. In total, 11 were private patients and three were GMS patients. Only one patient was non-Irish. On review of the patient files, seven of the 14 patients attend a gastroenterology/coeliac disease clinic in the hospital setting for follow-up, with only four of these patients having attended in the previous year.

BMI

At the first data collection, the BMI was not documented in any of the patient’s files, either from the practice notes or in correspondence letters from the hospital clinics. At the second data collection, eight patients had a documented BMI on their file. BMI results ranged from 21 to 30 with an average BMI measurement of 25.4. 

Assessing symptoms

Symptoms of coeliac disease were assessed in four patients in the previous year prior to the audit. Following the audit cycle, 10 patients had a documented symptom assessment carried out. This included for example enquiring about abdominal discomfort, bowel function and fatigue.

Blood investigations

At the first data collection, nine patients had attended either the practice or the hospital over the previous year for blood investigations. However, only six of these patients had all the blood tests performed as per guideline recommendations. The anti-tTG was performed in seven of the patients in the year prior. It is considered a useful investigation, as the serological measure of anti-tTG is an accepted and reliable marker for dietary adherence.⁹ At the second data collection, nine patients had all of the blood tests performed as recommended. 

DXA

As per the PCSG guideline, bone mineral density should be measured using dual x-ray absorptiometry (DXA) at the time of diagnosis. The test should then be repeated at the menopause for women, at the age of 55 years for men and at any age should a fragility fracture occur. At the first data collection, four patients had a DXA scan request on their file, three of which had been carried out. At the time of re-auditing, eight patients had a DXA scan requested, four of which had these completed at re-auditing. The results of the DXA scans showed varying degrees of bone density loss and patients were advised accordingly. 

Lifestyle advice and calcium intake

It is recommended that patients are advised on regular physical activity, and reducing smoking and alcohol consumption.¹⁰ Lifestyle advice was offered to four patients at the first data collection. This improved to 10 patients following the audit cycle. Lack of calcium can lead to osteoporosis and cause fractures. Calcium requirements are higher in coeliac disease, where the recommended daily calcium requirement is 1,500mg. At the first data collection, three patients had documented calcium advice. Calcium requirements were discussed with patients attending the practice for their annual review. A written information sheet including dietary advice was provided for each patient.¹¹ At re-auditing, nine patients had received advice on calcium intake.

Vaccinations

Because there is some degree of splenic atrophy in most patients with coeliac disease, according to the PCSG guidelines, patients should therefore be considered for vaccination against influenza, haemophilus influenza type b (Hib) and against Streptococcus pneumoniae (pneumococcus).

At the first data collection, five patients had received the annual influenza vaccine, as per recommendation. None of the patients had received vaccination against Hib or pneumococcus.

According to the National Immunisation Office website,¹² if not previously immunised with Hib vaccine, patients require two doses two months apart. If fully vaccinated, the patient requires one additional Hib vaccine. As the Hib vaccine was introduced to the Irish vaccination schedule in 1992, all the patients in this audit required two doses.

Pneumococcus is an important cause of serious infection, particularly in at risk groups, for example patients with coeliac disease. More than 90 polysaccharide capsular serotypes of pneumococci are known; however most infections are caused by a limited number of serotypes. There are two pneumococcal vaccines available in Ireland, the PCV 13 (Prevenar) and the PPV (Pneumovax). To clarify the recommended pneumococcal vaccination schedule in coeliac disease, we contacted the National Immunisation Office in Dublin directly. The practice was advised that patients with coeliac disease are a particular at risk group of hyposplenia. In regards to pneumococcal vaccination, adults in this group are required to receive two doses of PCV 13, each vaccination given at an interval of two months (however if any patient received a PPV vaccine first, one must wait a year before giving the PCV 13 vaccine to optimise the immune response). Also the patients require a dose of PPV, which is given at least two months after a dose of PCV 13 and a once only booster vaccination is recommended five years after the first vaccination for those less than 65 years of age. If an adult in this group is younger than 65 years and has had two doses of PPV, then they should receive a third dose when they reach 65 years. If an adult in this group is nearly 65 years when they receive the first dose, then they should receive the second booster dose after 65 years and after five years has past. They never require another dose as the immune response to the vaccine becomes poorer with age.  

At re-auditing, all eight patients who attended the practice for their annual review were advised regarding the recommended vaccinations and were started on a regime to complete the schedule as described above. 

Familial risk

First degree relatives of people with coeliac disease have a one in 10 chance of developing the disease. At the first data collection, it was noted that only one patient had received education on the familial risk of coeliac disease. At re-auditing, eight patients were advised regarding familial risk. 

Discussion

The re-audit cycle took place in January 2015. The audit cycle was short and was of only three months’ duration. Despite this, over 70% of patients (10 out of 14) had an annual review. This compared to 28% of patients who received an annual review prior to the audit (four out of 14 patients). Of the four that did not attend for review, three were private patients. Cost may be considered to be a barrier to attending for the annual review. Also, a large proportion of the population in our practice area of Roscam/Doughiska are a mobile group and are not permanent residents in the area. This is largely due to the young demographic and due to high levels of migration in the area. There are approximately 31 nationalities in the area. It is likely that some of the non-attendance was due to these patients having moved to a different area and may not have received the invitation letters.

The files of all patients with coeliac disease were reviewed to assess if improvement in care had been achieved. It was evident that an improvement was certainly achieved. This was particularly noted in the areas of BMI recording, which improved from 0% to 57%, arrangement of DXA scanning, which improved from 28% to 57% and also a notable improvement was made in relation to vaccination of this patient group. 

Prior to the audit none of the patients had arrangements in place to receive all the vaccines as per guideline recommendation. This improved to 57% at re-auditing. An improvement was also noted in the areas of symptom assessment, lifestyle and calcium intake advice and in educating patients in relation to familial risk. A clear template was also outlined for the staff, in regard to the annual blood investigations that are recommended, which improved the percentage of patients who had the full blood investigations from 43% to 64%. 

Conclusions

Patients with coeliac disease are recommended to have an annual review. There is now a template in place in the practice. This template assists in the comprehensive review of patients with coeliac disease. It was overall a very positive and educational experience for staff members to carry out this audit and it has also positively impacted the management and delivery of care to this patient population. Overall, staff and patient awareness of the disease has increased and the management of this condition within the practice has improved. 

References

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2. Guidelines for the Management of Patients with Coeliac Disease. British Society of Gastroenterology, 1998, 2002. www.bsg.org.uk
3. Decision points in the management of adult coeliac disease in primary care. Primary Care Society of Gastroenterology, 1999. www.pcsg.org.uk
4. Follow-up care of adult coeliac disease. Primary Care Society for Gastroenterology, 2001. www.pcsg.org.uk
5. Ljungman G, Myrdal U. Compliance in teenagers with coeliac disease – a Swedish follow-up study. Acta Paediatr 1993; 82: 235-238
6. Bardella MT, Molteni N, Prampolini L et al. Need for follow-up in coeliac disease. Arch Dis Child 1994; 70: 211-213
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8. The Management of Adults with Coeliac Disease in Primary Care. Primary Care Society for Gastroenterology Guideline, 2006. www.pcsg.org.uk 
9. Collin P, Kaukinen K, Vogelsang H et al. Antiendomysial and antihuman recombinant tissue transglutaminase antibodies in the diagnosis of coeliac disease: a biopsy proven European multicentre study. European Journal of Gastroenterology and Hepatology, 2005; 17(1): 41-43
10. Scott EM and Scott BB. A strategy for osteoporosis in gastroenterology. European Journal of Gastroenterology and Hepatology 1998; 10(8): 689-698
11. University Hospital Southampton, NHS Foundation Trust; Patient Information Leaflets. “Advice for Improving your Calcium Intake”. Produced by Department of nutrition and dietetics, Southampton General Hospital. www.uhs.nhs.uk 
12. www.hse.ie/eng/health/immunisation/.