MNT: Gastrointestinal Disorders (2015


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

PubMed ID: 16556185
Study Design:
Descriptive Study
D - Click here for explanation of classification scheme.
Quality Rating:
Neutral NEUTRAL: See Quality Criteria Checklist below.
Research Purpose:
To determine what proportion of patients with celiac disease remain under specialist follow-up and to examine patients perspectives on the long-term management of celiac disease.
Inclusion Criteria:
Patients who had a duodenal biopsy at the Nottingham City Hospital between July 1994 and July 2004, which was consistent with celiac disease, were asked to complete a questionnaire.
Exclusion Criteria:
Patients who had passed away were excluded from the survey.
Description of Study Protocol:
  • Recruitment: All cases of celiac disease diagnosed at Nottingham City Hospital between 1994 and 2004 were identified through reference to a pathology database
  • Design: All patients were sent a 10-point questionnaire. Results analyzed for descriptive study.
  • Blinding used: Not specified
  • Intervention: Not specified
  • Statistical analysis: Wilcoxon signed rank test to statistically assess differences in response when analyzing preferred mode of follow-up.
Data Collection Summary:

Timing of Measurements

Measurements were taken in a one-time questionnaire.

Dependent Variables

Questions were answered with the ratings of 1 (not very useful) to 5 (very useful), regarding the usefulness of follow-up clinic visit.
  • Annual symptom review/blood test
  • Opportunity for dietary review
  • Opportunity to ask questions about condition
  • Opportunity to ask questions about diet.

Preferred method of follow-up was also discerned relating to setting and practitioner.

Independent Variables
  • Diagnosis less than or more than five years
  • Sex
  • Membership in Celiac UK.

Control Variables

No controls specified.

Description of Actual Data Sample:
  • Initial N: 183 cases of celiac disease identified and still living at time of study
  • Attrition (final N): 126 patients returned the survey; 33 males, 93 females
  • Mean age: 56 years; range, 17 to 92 years
  • Ethnicity: Not specified
Other Relevant Demographics
  • Mean time since diagnosis: 5.4 years (58% less than five years, 42% more than five years)
  • 82% respondents were members of the Celiac UK organization.
  • Not specified.
  • Nottingham, United Kingdom.
Summary of Results:

Key Findings

  • 40% of respondents were confident that they were following a strict gluten-free diet (GFD), 48% were trying to follow a GFD but were not always sure and 11% would knowingly consume gluten-containing foods at times
  • 89% of respondents were receiving gluten-free products on prescription
  • 20% of respondents were receiving advice on how many gluten-free products they required (21 of 25 received advice from a dietitian and four from their general practitioner)
  • 62% were under some form of regular follow-up, including hospital clinic (57%) and general practitioner (5%)
  • Of those that participated in hospital clinics, most found the general reassurance, annual symptom review/blood test, opportunity for diet review, opportunity to ask questions about the condition and diet very helpful
  • When asked about follow-up preference, most preferred to see a dietitian with a doctor being available (P=0.006).

Other Findings

There was no major difference between respondents diagnosed for less than or more than five years.

Author Conclusion:
  • This study shows that 40% of patients with celiac disease are not under regular doctor follow up
  • The views of the respondents suggest that celiac disease patients requiring long-term follow-up prefer a dietitian-led clinic with appropirately trained medical support.
Funding Source:
University/Hospital: Nottingham City Hospital, United Kingdom
Reviewer Comments:
Quality Criteria Checklist: Primary Research
Relevance Questions
  1. Would implementing the studied intervention or procedure (if found successful) result in improved outcomes for the patients/clients/population group? (Not Applicable for some epidemiological studies) Yes
  2. Did the authors study an outcome (dependent variable) or topic that the patients/clients/population group would care about? Yes
  3. Is the focus of the intervention or procedure (independent variable) or topic of study a common issue of concern to dieteticspractice? Yes
  4. Is the intervention or procedure feasible? (NA for some epidemiological studies) Yes
Validity Questions
1. Was the research question clearly stated? Yes
  1.1. Was (were) the specific intervention(s) or procedure(s) [independent variable(s)] identified? Yes
  1.2. Was (were) the outcome(s) [dependent variable(s)] clearly indicated? Yes
  1.3. Were the target population and setting specified? Yes
2. Was the selection of study subjects/patients free from bias? Yes
  2.1. Were inclusion/exclusion criteria specified (e.g., risk, point in disease progression, diagnostic or prognosis criteria), and with sufficient detail and without omitting criteria critical to the study? Yes
  2.2. Were criteria applied equally to all study groups? Yes
  2.3. Were health, demographics, and other characteristics of subjects described? No
  2.4. Were the subjects/patients a representative sample of the relevant population? Yes
3. Were study groups comparable? N/A
  3.1. Was the method of assigning subjects/patients to groups described and unbiased? (Method of randomization identified if RCT) N/A
  3.2. Were distribution of disease status, prognostic factors, and other factors (e.g., demographics) similar across study groups at baseline? N/A
  3.3. Were concurrent controls or comparisons used? (Concurrent preferred over historical control or comparison groups.) N/A
  3.4. If cohort study or cross-sectional study, were groups comparable on important confounding factors and/or were preexisting differences accounted for by using appropriate adjustments in statistical analysis? N/A
  3.5. If case control study, were potential confounding factors comparable for cases and controls? (If case series or trial with subjects serving as own control, this criterion is not applicable.) N/A
  3.6. If diagnostic test, was there an independent blind comparison with an appropriate reference standard (e.g., "gold standard")? N/A
4. Was method of handling withdrawals described? Yes
  4.1. Were follow-up methods described and the same for all groups? N/A
  4.2. Was the number, characteristics of withdrawals (i.e., dropouts, lost to follow up, attrition rate) and/or response rate (cross-sectional studies) described for each group? (Follow up goal for a strong study is 80%.) Yes
  4.3. Were all enrolled subjects/patients (in the original sample) accounted for? Yes
  4.4. Were reasons for withdrawals similar across groups? Yes
  4.5. If diagnostic test, was decision to perform reference test not dependent on results of test under study? N/A
5. Was blinding used to prevent introduction of bias? No
  5.1. In intervention study, were subjects, clinicians/practitioners, and investigators blinded to treatment group, as appropriate? N/A
  5.2. Were data collectors blinded for outcomes assessment? (If outcome is measured using an objective test, such as a lab value, this criterion is assumed to be met.) No
  5.3. In cohort study or cross-sectional study, were measurements of outcomes and risk factors blinded? N/A
  5.4. In case control study, was case definition explicit and case ascertainment not influenced by exposure status? N/A
  5.5. In diagnostic study, were test results blinded to patient history and other test results? N/A
6. Were intervention/therapeutic regimens/exposure factor or procedure and any comparison(s) described in detail? Were interveningfactors described? Yes
  6.1. In RCT or other intervention trial, were protocols described for all regimens studied? N/A
  6.2. In observational study, were interventions, study settings, and clinicians/provider described? Yes
  6.3. Was the intensity and duration of the intervention or exposure factor sufficient to produce a meaningful effect? N/A
  6.4. Was the amount of exposure and, if relevant, subject/patient compliance measured? N/A
  6.5. Were co-interventions (e.g., ancillary treatments, other therapies) described? No
  6.6. Were extra or unplanned treatments described? No
  6.7. Was the information for 6.4, 6.5, and 6.6 assessed the same way for all groups? Yes
  6.8. In diagnostic study, were details of test administration and replication sufficient? N/A
7. Were outcomes clearly defined and the measurements valid and reliable? Yes
  7.1. Were primary and secondary endpoints described and relevant to the question? N/A
  7.2. Were nutrition measures appropriate to question and outcomes of concern? Yes
  7.3. Was the period of follow-up long enough for important outcome(s) to occur? N/A
  7.4. Were the observations and measurements based on standard, valid, and reliable data collection instruments/tests/procedures? Yes
  7.5. Was the measurement of effect at an appropriate level of precision? Yes
  7.6. Were other factors accounted for (measured) that could affect outcomes? No
  7.7. Were the measurements conducted consistently across groups? Yes
8. Was the statistical analysis appropriate for the study design and type of outcome indicators? Yes
  8.1. Were statistical analyses adequately described and the results reported appropriately? Yes
  8.2. Were correct statistical tests used and assumptions of test not violated? Yes
  8.3. Were statistics reported with levels of significance and/or confidence intervals? Yes
  8.4. Was "intent to treat" analysis of outcomes done (and as appropriate, was there an analysis of outcomes for those maximally exposed or a dose-response analysis)? Yes
  8.5. Were adequate adjustments made for effects of confounding factors that might have affected the outcomes (e.g., multivariate analyses)? No
  8.6. Was clinical significance as well as statistical significance reported? Yes
  8.7. If negative findings, was a power calculation reported to address type 2 error? N/A
9. Are conclusions supported by results with biases and limitations taken into consideration? Yes
  9.1. Is there a discussion of findings? Yes
  9.2. Are biases and study limitations identified and discussed? Yes
10. Is bias due to study's funding or sponsorship unlikely? Yes
  10.1. Were sources of funding and investigators' affiliations described? Yes
  10.2. Was the study free from apparent conflict of interest? Yes