The Crohn's and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease

OBJECTIVE: The aim of this study was to develop a valid and reliable questionnaire assessing patient knowledge of inflammatory bowel disease (IBD) and its treatment--the Crohn's and Colitis Knowledge (CCKNOW) Score. METHODS: A total of 30 multiple choice questions were constructed into a draft questionnaire. This was piloted on a random selection of participants with differing IBD knowledge levels; junior doctors, nurses, and ward clerks. Factor analysis eliminated questions with poor discriminant ability. The resulting 24-item questionnaire (CCKNOW score) was retested on the three groups, and a Kruskal-Wallis test determined the questionnaire's ability to discriminate between the groups. Reliability and readability were tested using Cronbach's a and the Flesch Kincaid reading score. The validated CCKNOW was then tested on patients from the Leicestershire IBD database. RESULTS: CCKNOW scores differed significantly across the groups of doctors, nurses, and ward clerks (median 22, 16, and five, respectively) T = 40.35, p < 0.0001. The reliability was very good with a Cronbach's alpha of 0.95 and the readability was also high. The median score on the CCKNOW for IBD patients was 10, with no significant difference between ulcerative colitis and Crohn's disease. Patients who are members of NACC (National Association of Crohn's and Colitis) achieve statistically significantly higher scores than do nonmembers (difference in medians 4, 95% confidence interval 4-6, p < 0.0001). CONCLUSIONS: The CCKNOW score provides a valuable index of overall knowledge. It is self-administered and psychometric tests show it to be valid, reliable, and readable. It may be used in the future as a tool to evaluate patient education programs.