Coping with Inflammatory Bowel Disease Surveillance and Risk

The purpose of this study is to gather information about how people with inflammatory bowel disease (IBD) cope with surveillance colonoscopy and their high risk for colorectal cancer. Participants in this research will complete an initial telephone interview that will take about 45 minutes and a mailed questionnaire that will take about the same amount of time. The initial interview and questionnaire will include questions about their background, their personal characteristics, their relationship with their spouse or partner, their history of IBD, and their thoughts and feelings about IBD, your risk for colorectal cancer, and cancer risk reduction options such as surveillance and surgery. After they complete the initial interview and questionnaire, they will be asked to complete a very brief questionnaire each night for 4 weeks (called a daily diary questionnaire), beginning about 2 weeks before their scheduled follow-up surveillance colonoscopy and ending about 2 weeks after it. Each daily diary questionnaire takes 5 minutes or less to complete and asks about events that occurred that day. The study ends with a follow-up telephone interview that will take about 45 minutes and that will include questions similar to those asked in the initial interview and questionnaire. Participants' medical records will be reviewed to assess information about their IBD (for instance, whether they have ulcerative colitis or Crohns disease, and the extent of their disease) and the results of their surveillance colonoscopies. In addition, if they are willing, their spouse or partner will be invited to participate in this study by completing their own initial interview, daily diary questionnaires, and follow-up interview. Patients may participate whether or not their spouse or partner participates.