Abstract

BACKGROUND: Disease-related knowledge can positively influence in the acceptance of the disease, increase treatment compliance and improve quality of life in patients with Inflammatory Bowel Disease (IBD). It also allows the patients to become more involved in decisions regarding the treatment of their disease, achieving a better doctor-patient relationship. The aim of our study was to identify disease-related knowledge in patients with IBD and determine possible factors associated to the knowledge level. METHODS: We conducted a prospective study including patients presenting to our outpatient IBD Program between October 2014 and July 2015. Adult patients (18 years or older) were invited to participate, answering a demographic and clinical questionnaire. A Spanish-translated version of the 24-item Crohn's and Colitis Knowledge score (CCKNOW) was used to assess disease-related knowledge. Patients also completed a demographic and clinical questionnaire including age, gender, educational level, employment status, history of IBD surgery and current IBD treatment. The study was approved by our Institutional Review Board, and all patients signed an informed consent. For statistical analysis categorical variables were expressed as frequency and percentage, and compare using chi square test. For continuous variables medians and range were used, and compare with Mann Whitney Test (2 groups) or Kruskal-Wallis Test (more than 2 groups). A P value <0.05 was considered as statistically significant. RESULTS: A total of 203 patients were included, 62% female, 66% with Ulcerative Colitis (UC), with a median of age of 34 years (range 18-79) and a median of disease duration of 4 years. More than half of the patients had university or postgraduate education (58%) and 68% were employed. Related to treatment, 41% were using 5-ASA and 30% immunomodulators. The median CCKNOW score was 9 (range 1-20). 71% of the patients answered more than 50% of the questions incorrectly or did not know the answer. A lower disease-related knowledge was observed in questions related to pregnancy/fertility and surgery/complications (less than 20% of the patients answered correctly). Patients >50 years (median CCKNOW score 8 versus 9.5; P = 0.033), with UC (9 versus 11 in Crohn's Disease patients; P = 0.017), with less than 5 years of disease (9 versus 10; P = 0.045) and patients without IBD surgery (9 versus 11.5; P = 0.004) showed a lower disease-related knowledge. Interestingly, there was no association between CCKNOW scores and the educational level of the patients. CONCLUSIONS: Patients attending our IBD Program show a poor disease-related knowledge, which is similar to knowledge levels observed in developed countries. It is necessary to assess patient's knowledge in order to develop educational strategies, and evaluate the impact of these in the compliance and quality of life of IBD patients.