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Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Summary

Background

Coeliac disease affects up to 1% of the population and the British Society of Gastroenterology recommends long-term follow-up of these patients, although the absolute risk of complications is small.

Aim

To determine what proportion of patients with coeliac disease remain under specialist follow-up and to examine patients’ perspectives on the long-term management of coeliac disease.

Methods

A questionnaire was sent to 183 patients who had a duodenal biopsy between July 1994 and July 2004 which was consistent with coeliac disease.

Results

A total of 126 (69%) patients returned their questionnaire. Patients had on average been diagnosed with coeliac disease 5.4 years earlier. Eighty-eight percentage were trying to follow a strict gluten-free diet. Sixty-two percentage of patients were under regular follow-up although this varied between hospital clinic (doctor/dietitian, 92%) and General Practitioner (8%). Most patients found at least one aspect of the hospital out-patient clinic very useful. The preferred method of coeliac disease follow-up was to see a dietitian with a doctor being available (P < 0.05 vs. all other options).

Conclusions

Respondents to this study showed great variation in follow-up of their coeliac disease – 38% were under no active follow-up. Patients would prefer to see a dietitian for long-term follow-up.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Coeliac disease (CD) is a condition estimated to affect approximately 1% of the western European population1, 2 and is usually managed by gastroenterologists. The British Society of Gastroenterology recommends that all patients with CD be kept under long-term follow-up because of potentially serious long-term complications (guidelines available at http://www.bsg.org.uk). Long-term complications of CD include increased risk of certain malignancies,3–8 in particular lymphoma9 and osteoporotic fracture10, 11 although the absolute risk of developing these complications is small.8 The mainstay of treatment for CD is a gluten-free diet (GFD), and expert dietetic input is essential in the effective out-patient management of CD. Strict adherence to a GFD has been shown to be associated with reduction in the incidence of malignant complications5 and mortality6, 12, 13 in coeliac patients. Patient education in association with close supervision by a dietitian and interested doctor seem to be the most important factors in achieving dietary compliance in CD.14–16 The majority of patients once established on a GFD will not, however, develop any long-term complications, bringing into question the necessity of long-term follow-up. We consequently decided to ask our patients with CD about their views on the long-term management of their CD.

Materials and methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

We identified all cases of CD diagnosed at Nottingham City Hospital between 1994 and 2004 through reference to a pathology database. The hospital notes of cases with histology typical of CD were reviewed to confirm the correct clinical diagnosis.

Patients were sent a 10-point questionnaire exploring their current dietary practice and follow-up. It also enquired as to their preferred method of follow-up and obtained views on the usefulness of various aspects (full breakdown in Results section) of hospital appointments (if attending). We also performed a separate analysis comparing the views and practices of patients with a more recent diagnosis of CD (<5 years since biopsy) and those who had been diagnosed more than 5 years ago.

Data are presented as summary statistics as this is a descriptive study. We used the Wilcoxon signed rank test to statistically assess differences in response when analysing preferred mode of follow-up.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

We identified 183 cases of CD in the 10-year period from 1994 to 2004 who were still alive. About 126 of 183 patients returned their questionnaires (response rate 69%). The demographics of the respondents are shown in Table 1. Most respondents were female and were members of Coeliac UK.

Table 1.  Demographics of respondents (n = 126)
Mean age (range)56 (17–92)
Sex (M:F)33:93
Mean time since diagnosis (years)5.4
Number diagnosed <5 years73 (58%)
Number diagnosed >5 years53 (42%)
Membership of Coeliac UK97/119 (82%)

Dietary habits and prescription use

Our first questions related to dietary habits and prescription use. Forty percentage (49 of 122) of respondents were confident that they were following a strict GFD, while 48% (58 of 122) were trying to follow a strict GFD but not always sure and 11% (14 of 122) would knowingly consume gluten-containing foods at times. One respondent was on a normal diet. Eighty-nine percentage of respondents (111 of 125) were receiving gluten-free products on prescription. Only 20% (25 of 125) were receiving advice on how many gluten-free products they required. Of these 25, 21 were receiving advice from a dietitian and four from their GP.

Follow-up pattern

Sixty-two percentage of respondents (78 of 126) were under some form of regular follow-up. This varied between hospital clinic (n = 72, 57%) and GP (n = 6, 5%). Most were receiving follow-up on an annual basis (75% and 67% of those seeing hospital doctor and dietitian respectively). Thirty-eight percentage (48 of 126) of our respondents were under no formal follow-up of their CD.

Patient views on out-patient clinic

We asked our patients to grade the usefulness of the following aspects of their hospital appointment from 1 (not very useful) to 5 (very useful): (i) general reassurance; (ii) annual review and/or symptom check and/or blood test; (iii) opportunity for dietary review; (iv) chance to ask questions about condition; and (v) chance to ask questions about diet.

Most patients found aspects of the clinic very useful and these results are summarized in Table 2. The three most useful aspects were general reassurance, annual review/blood test and opportunity to ask more about their condition whereas the least favourable responses specifically related to GFD (dietary review and opportunity to ask more about their diet).

Table 2.  Respondents’ views on usefulness of various aspects of out-patient review
Aspect of clinicUsefulness of aspect of clinic (5 = very useful, 1 = not very useful)
54321
  1. Respondents were asked to grade each aspect of clinic from 5 (very useful) to 1 (not at all useful).

  2. The percentage values are given in parentheses.

General reassurance (n = 78)40 (51)12 (15)19 (24)2 (3)5 (6)
Annual symptom review/blood test (n = 81)49 (60)14 (17)7 (9)5 (6)6 (7)
Opportunity for dietary review (n = 77)33 (43)13 (17)12 (16)6 (8)13 (17)
Opportunity to ask questions about condition (n = 77)44 (57)15 (19)10 (13)3 (4)5 (6)
Opportunity to ask questions about diet (n = 73)23 (32)18 (25)13 (18)6 (8)13 (18)

Follow-up preference

We then asked patients what sort of follow-up they would prefer for their CD, and in particular who they would like to see and how often. We gave them five options and asked them to place them in order of preference (1–5). The results are summarized in Figure 1. The most popular option was to see a dietitian with a doctor being available. This was statistically significant against all other options (including the second most popular choice, ‘seeing a doctor’, P = 0.006). No follow-up was the least preferred option. There was no major difference in response pattern between those diagnosed more recently (<5 years) to those diagnosed more than 5 years ago. Of 107 respondents 72 preferred to be seen once a year, 18 more than once a year and 17 less than once a year.

image

Figure 1. Preferred follow-up pattern of patient respondents with coeliac disease. Data are expressed as mean (±S.E.M.). Respondents ranked preferred follow-up options from 1 to 5 (1 = preferred, 5 = least preferred). * This option was statistically significant (P < 0.05) against all other options by Wilcoxon signed rank test.

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We also left a space on the questionnaire for any additional comments. Clearly some patients struggled maintaining a GFD more than others and wished for more dietetic input. Other patients felt follow-up and an annual blood test was very reassuring. Some patients clearly appreciated the extra time available and practical advice given when seeing a dietitian.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

Of the 126 respondents to our questionnaire almost 40% were under no active follow-up for their CD – this is contrary to advice from the BSG. However, we suspect that many of these patients are in contact with medical services as 89% of all respondents were obtaining gluten-free products on prescription. However, this may not constitute a ‘review’ of their CD as only 20% reported they were receiving advice on how many gluten-free products they required on prescription. Most patients attending hospital out-patient clinics for supervision of their CD found some aspects of their clinic visit useful, although we noted that the lowest scoring responses related to aspects of dietary advice. This may relate to the fact that most gastroenterologists are not expert in advising on GFD.

Coeliac disease is a lifelong condition for which the predominant treatment is a GFD and ideally, therefore an appropriately trained dietitian should always be available in the clinic for any dietary queries. Almost 50% of our respondents felt unsure as to whether they had eliminated all gluten-containing foods from their diet. This was from a group of respondents who we would expect to be reasonably well informed as 82% were members of Coeliac UK. It was of little surprise to us that the preferred follow-up option of patients with CD was to see a dietitian with a doctor being available. We make this statement because from our experience once the diagnosis of CD has been made, dietary adherence is the major practical problem facing patients. It would also appear that patients derive reassurance from an ‘annual check-up’ as no follow-up was the least preferred option. Clearly individual patients have different needs and follow-up patterns need to be tailored accordingly, particularly for the coeliac patient with other comorbidities (14% of our patients had other gastrointestinal (GI) problems necessitating their attendance at clinic and 15% evidence of reduced bone mineral density on DEXA scan).

Following a GFD can have a massive impact on quality of life, particularly in childhood, and there may often be emotional and psychological impacts of the disease on patients. Simply following a dietary advice sheet may not be enough and patients should be given specific strategies to help them follow a diet.17 Patients also use a number of sources to get information about gluten-free products and it may be that advice given is not always helpful or of sufficiently high quality.18, 19 For these reasons it is important that doctors or dietitians seeing CD patients are appropriately trained.

The need for long-term hospital follow-up of CD is questionable. The long-term risks of malignancy are small in terms of absolute risk20 although strict adherence to GFD may reduce both incidence of malignancy and mortality.5, 6, 12, 13 The largest study examining risk of malignancy was based on 4732 coeliac patients from the UK General Practice Research Database (GPRD). In this population-based study the overall hazard ratio for malignancy was 1.3 (95% CI: 1.1–1.5), but after excluding malignancies occurring in the year after diagnosis this fell to 1.1 (0.87–1.4). An increased risk of lymphoproliferative disease was noted, consistent with previous observations, with a hazards ratio of 4.8 (2.7–8.5). Fracture risk appears to be only mildly elevated11 and the BSG guidelines for management of osteoporosis in CD21 have provoked much argument and are currently under revision.

A recent National Institute of Health (NIH) consensus conference on CD recommends annual follow-up with measurement of antibody titres and blood screening for nutritional deficiencies.22 This study shows that many patients with CD are not under regular doctor follow-up. The views of our respondents would suggest that for CD patients requiring long-term follow-up a dietitian-led clinic with appropriately trained medical support would be the preferred mode and would have patient support.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References

The authors would like to thank Dr W.P. Goddard and Dr. K. Teahon for allowing to contact their patients and Janet Lewis and Kathryn Blount for advice on the design of the questionnaire. Dr T. Card provided useful advice on statistical analysis.

No external funding was received for this study.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Materials and methods
  5. Results
  6. Discussion
  7. Acknowledgements
  8. References
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