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The Influence of Information Sources on Knowledge and Anxiety in Inflammatory Bowel Disease Patients

This study has been completed.
Information provided by (Responsible Party):
Christian Selinger, National Health Service, United Kingdom Identifier:
First received: July 31, 2013
Last updated: March 21, 2016
Last verified: March 2016

Inflammatory Bowel Diseases (IBD) are life-long, incurable illnesses that can have a profound effect on the patients quality of life. Disease education is a corner stone of IBD care to enable patients to take up an active role in their disease management. While patient education is enshrined in the IBD standards, actual patient knowledge is often poor.3 Knowledge is not associated with the level of the patient's educational achievement, but member of patient organisations such as Crohn's and Colitis UK (CCUK) have significantly better knowledge than non-members. This may highlight the positive effects of education offered by CCUK, but it is also conceivable that patients with a greater interest in their disease are more like to join organisations like CCUK. Different sources of patient information may therefore influence what level of disease related knowledge a patient achieves.

Apart from high quality clinical information provided by professional organisation (British Society of Gastroenterology, European Crohn's and Colitis Organisation), the National Health Service and charities (CORE, CCUK), there is also a host of unregulated information available. The emerging dominance of the internet for information gathering has provided easy access for patients to a host of websites providing information on IBD. A number of these provide alternative (not evidence based) views, which could have a potentially negative impact on patient's knowledge. Furthermore patients often share their stories on internet forums and it is likely that those stories share are more likely to represent the extreme ends of disease rather than those experienced by the majority. This could potentially cause anxiety in patients with IBD. The quality of information found on the internet varies widely and up to 50% of websites have been judged as poor. The vast majority of patients with IBD have access to the internet and more than half use to search for health related information.7 We have previously also demonstrated that patients with anxiety have better disease related knowledge of IBD.

Condition Intervention
Crohn's Disease
Ulcerative Colitis
Other: Questionnaire

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Prospective
Official Title: The Influence of Information Sources on Knowledge and Anxiety in Inflammatory Bowel Disease Patients

Resource links provided by NLM:

Further study details as provided by National Health Service, United Kingdom:

Primary Outcome Measures:
  • CCKNOW [ Time Frame: 12 months ]
    CCKNOW scores according to preferred information source

Secondary Outcome Measures:
  • HADS-A [ Time Frame: 12 months ]
    HADS-A scores according to preferred information source

Enrollment: 307
Study Start Date: October 2013
Study Completion Date: February 2016
Primary Completion Date: February 2016 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
IBD patients
Ambulatory patients attending IBD clinics at Leeds Teaching Hospitals
Other: Questionnaire


Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
ambulatory patients attending IBD clinics at Leeds Teaching Hospitals

Inclusion Criteria:

patients attending IBD clinics at Leeds Teaching Hospitals

Exclusion Criteria:

  • Individuals who are unable to give informed consent.
  • Individuals who do not speak English, as the questionanire is selfadministered.
  • Individuals under 18 years of age.
  • Individuals who are attending Gastroenterology clinics at Leeds General Infirmary and St. James's University Hospital because of a flare up of disease activity of their ulcerative colitis or Crohn's disease.
  • Individuals with Crohn's disease who have a stoma (ileostomy), due to practical difficulties in assessing clinical activity in this patient group (it is not actually possible to calculate the HarveyBradshaw index in patients with an ileostomy).
  • Individuals who, in the opinion of the investigator, are not suitable to participate in the study.
  • Individuals who refuse to give written, informed consent to be involved.
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Please refer to this study by its identifier: NCT01916161

United Kingdom
Leeds Teaching Hospitals NHS Trust
Leeds, Yorkshire, United Kingdom, LS9 7TF
Sponsors and Collaborators
National Health Service, United Kingdom
  More Information

Responsible Party: Christian Selinger, Consultant Gastroenterologist, National Health Service, United Kingdom Identifier: NCT01916161     History of Changes
Other Study ID Numbers: IBDINFOSOURCE1
Study First Received: July 31, 2013
Last Updated: March 21, 2016

Keywords provided by National Health Service, United Kingdom:
Crohn's disease
ulcerative colitis
patient knowledge
information sources

Additional relevant MeSH terms:
Anxiety Disorders
Crohn Disease
Colitis, Ulcerative
Intestinal Diseases
Inflammatory Bowel Diseases
Mental Disorders
Gastrointestinal Diseases
Digestive System Diseases
Colonic Diseases
Pathologic Processes processed this record on May 24, 2017