S1214 How Do IBD Patients Get Their Information? a Look At IBD Information Resources and Perception of Doctor Message in Patients with Extensive Crohn's or Ulcerative Colitis

Abstract

Purpose: Patients with chronic, extensive ulcerative or Crohn's colitis have an increased risk of colon cancer and need periodic colonoscopic surveillance. As part of a large study that explores adherence to colonoscopy, we looked at where our patients obtained information regarding their IBD and their risk of colon cancer. Methods: 259 patients with UC or Crohn's colitis for at least 7 yrs and at least 1/3 of the colon involved participated in this crosssectional questionnaire study. The study was designed for patients to participate during one clinic visit or to receive one mailing for the purpose of consenting and completing the questionnaire. Results: Median age was 48, and median disease duration 20 yrs. 44% of patients had UC, and 51% were female. Information sources included healthcare professionals, friends and family, other IBD patients, online resources, mailings, books, and other publications. Each source was classified as not used, sometimes used, or extensively used. 71% of patients used their physicians as extensive sources of information. Other extensively used sources included nurses/hospital staff (10%), family (8.9%), friends (2.7%) and other IBD patients (5.8%). 57-63% of patients had never used these other personal sources of information. Websites used extensively included CCFA (10.4%) and others including Mayo Clinic, Medscape, PubMed, and WebMD (2.7%). Only 0.8% of patients extensively used on-line chat rooms, bulletin boards, or news groups. 10% of patients used mailings from the CCFA and 6.9% used books and magazines extensively. 49% used the CCFA website, mailings, and brochures only sometimes and 41% had never used them. Only 1.5% extensively used other print sources such as journals and newspaper articles. Since the main source of information used extensively was from physicians, we asked patients what type of advice their doctors gave them. 75% of patients answered that their doctor had definitely told them that colonoscopies can protect against colon cancer and 53% stated that their doctor definitely told them that colon cancer can be cured when caught early. Only 31% of patients reported that their doctors definitely told them that they are more likely to get colon cancer because of their extensive colitis. Only 15% of patients reported that their doctors told them that 5-ASAmedications could lower their chances of getting colon cancer. Conclusions: Physicians are the main source of information for our group of patients with extensive ulcerative or Crohn's colitis. For this reason, the doctor message must not only be accurate but clearly conveyed. This will likely require both patient and physician education programs.