BACKGROUND: Patients with extensive ulcerative (UC) or Crohn's (CD) colitis have an increased risk of colon cancer and require colonoscopic surveillance. This study explores patient attitudes and behavior regarding inflammatory bowel disease (IBD), colonoscopies, and colon cancer risk. METHODS: In all, 514 patients with UC or CD colitis for at least 7 years and at least one-third of the colon involved participated in this cross-sectional questionnaire study performed at three tertiary referral IBD clinics. RESULTS: In all, 288 patients were female, 262 had UC, and 252 had CD. The mean age was 48 (range, 20-88) and mean number of years with symptoms was 20 (range, 7-51); 70.8% reported "my doctor" as an extensive information source. The mean perceived lifetime risk of developing colon cancer without having routine colonoscopies was 56% (SD 24.193). We developed and validated a scale of 10 important messages that IBD patients remember doctors discussing with them ("Doctor Told Scale"). Higher scores correlated with better quality of life (P < 0.001) and positive descriptors of colonoscopies and IBD (P < 0.001). Patients with higher scores perceived a higher chance of getting colon cancer without having surveillance colonoscopies (P < 0.001) and were more likely to report that the correct surveillance interval is every 2 years (P < 0.01). CONCLUSIONS: Patients who remember their doctor's messages are more likely to have a positive outlook about colonoscopies and IBD, have a better quality of life, undergo surveillance colonoscopies at the correct interval, and perceive cancer risk more realistically.
BACKGROUND:Patients with extensive ulcerative (UC) or Crohn's (CD) colitis have an increased risk of colon cancer and require colonoscopic surveillance. This study explores patient attitudes and behavior regarding inflammatory bowel disease (IBD), colonoscopies, and colon cancer risk. METHODS: In all, 514 patients with UC or CD colitis for at least 7 years and at least one-third of the colon involved participated in this cross-sectional questionnaire study performed at three tertiary referral IBD clinics. RESULTS: In all, 288 patients were female, 262 had UC, and 252 had CD. The mean age was 48 (range, 20-88) and mean number of years with symptoms was 20 (range, 7-51); 70.8% reported "my doctor" as an extensive information source. The mean perceived lifetime risk of developing colon cancer without having routine colonoscopies was 56% (SD 24.193). We developed and validated a scale of 10 important messages that IBD patients remember doctors discussing with them ("Doctor Told Scale"). Higher scores correlated with better quality of life (P < 0.001) and positive descriptors of colonoscopies and IBD (P < 0.001). Patients with higher scores perceived a higher chance of getting colon cancer without having surveillance colonoscopies (P < 0.001) and were more likely to report that the correct surveillance interval is every 2 years (P < 0.01). CONCLUSIONS:Patients who remember their doctor's messages are more likely to have a positive outlook about colonoscopies and IBD, have a better quality of life, undergo surveillance colonoscopies at the correct interval, and perceive cancer risk more realistically.