Patient knowledge in inflammatory bowel disease: the Crohn's and Colitis Knowledge Score

Eur J Gastroenterol Hepatol. 2014 Jan;26(1):1-5. doi: 10.1097/MEG.0b013e328365d21a.


In the UK, key professional organizations have joined to provide inflammatory bowel disease (IBD) standards to be delivered by the NHS, highlighting the importance of patient education and support. The Crohn's and Colitis Knowledge Score (CCKNOW) is a validated multiple-choice questionnaire on the subject of IBD that is able to objectively quantify the level of patient knowledge. The aim of this study was to summarize the findings of the CCKNOW, in particular, the current level of patient knowledge and the implications clinically. Literature search was conducted using Medline, Google Scholar and the Cochrane Library, compiling results of studies using the CCKNOW to date. In the UK, a median score of 10 was achieved by participants with IBD in Leicestershire in 1999. Recent surveys in the Northwest and Pennine Trust achieved median scores of 9 and 7, respectively. Knowledge deficits regarding fertility and pregnancy were found, as seen in 1999. Studies in Canada and Iran achieved median scores of 13 and 4, respectively. Sri Lanka achieved a mean score of 6.86 (range 1-16). Higher CCKNOW scores were associated with the use of adaptive coping strategies. A significant positive link was found between patient knowledge and anxiety levels. There was no significant difference in CCKNOW scores between patients with the complication of colorectal cancer versus control populations. In the UK, patient knowledge of IBD may be no better than in 1999. The subjects of fertility and implications for pregnancy are particular areas of deficit. Further knowledge shortfalls may exist in the developing countries. Evidence suggests that improving knowledge may empower patients to use more adaptive coping strategies but may not be effective in reducing anxiety or the risk complications such as colorectal cancer.

Publication types

  • Review

MeSH terms

  • Adaptation, Psychological
  • Anxiety / epidemiology
  • Anxiety / psychology
  • Colitis, Ulcerative / diagnosis
  • Colitis, Ulcerative / epidemiology
  • Colitis, Ulcerative / psychology
  • Colitis, Ulcerative / therapy
  • Crohn Disease* / diagnosis
  • Crohn Disease* / epidemiology
  • Crohn Disease* / physiopathology
  • Crohn Disease* / psychology
  • Crohn Disease* / therapy
  • Female
  • Fertility
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Infertility / epidemiology
  • Infertility / physiopathology
  • Male
  • Patient Education as Topic
  • Power, Psychological
  • Pregnancy
  • Prognosis
  • Risk Factors
  • Surveys and Questionnaires*