Background and aims: This study was performed to have a first-time assessment on the knowledge level of a population of inflammatory bowel disease (IBD) patients in a developing country like Iran and to identify their health information preferences.
Methods: One hundred over 18-year-old IBD patients presenting to an outpatient gastroenterology clinic in Tehran from April to November 2004 were asked to complete Persian-translated version of 24-item Crohn's and Colitis Knowledge (CCKNOW) score questionnaire and an additional questionnaire collecting their favorite disease-related knowledge topics.
Results: All of the patients (64 females, 36 males) wished to know more about their disease. The cause of IBD and the medications were the most favorite knowledge topics. The mean and median of CCKNOW score of the patients was 4.65 and 4.0 (out of 24), respectively. Women showed significantly higher scores than men (p=0.006). There was also a weak positive correlation between the level of education and CCKNOW score (Spearman's rho=0.23, p=0.02). No significant correlation was found between age, duration of disease, self-estimated level of suffering from disease, and CCKNOW score. The most severe knowledge deficit was evident in knowledge on IBD complications.
Conclusion: Despite the overt inclination of Iranian IBD patients to know more about their disease, their knowledge levels were significantly lower than the IBD patients in developed countries. The more profound knowledge deficit in IBD complications may lead to disastrous aftermaths such as late diagnosis of colorectal cancer induced by prolonged IBD. Vigorous patient education programs for the Iranian IBD patient are suggested focusing on areas of knowledge deficit and their favorite topics.