The cause of death in inflammatory bowel disease: a comparison of death certificates and hospital charts in Rochester, New York.

OBJECTIVE: This study examines the causes of death from Crohn's disease and ulcerative colitis by comparing death certificates with hospital charts as part of an ongoing, community-based analysis in Rochester, NY. METHODS: A registry of 1358 inflammatory bowel disease patients followed from January 1973 to December 1989 was analyzed for the cause of death by a study of death certificates as well as by a study of hospital records, including surgical pathology and autopsy records. A panel of physicians defined specific criteria for diagnosis, cause of death, and relation of death to inflammatory bowel disease. RESULTS: One hundred and thirty patients (59 with ulcerative colitis and 71 with Crohn's disease) from the registry were found to have death certificates recorded by Monroe County during this period. There was an 80% concordance of the death certificate to the hospital record for the cause of death and its relationship to inflammatory bowel disease. Discordance was noted in cases of colon cancer and surgical complications. CONCLUSIONS: Sixty-eight percent of Crohn's disease and 78% of ulcerative colitis patients died from causes unrelated to their inflammatory bowel disease. Deaths caused by Crohn's disease decreased from 44% in the 1973-1980 period to 6% in the 1981-1989 period. Crohn's disease was a direct cause of death in 25% of the female patients, whereas only 6% of male patients died directly of Crohn's disease. Colorectal cancer caused 14% of the deaths in ulcerative colitis patients, three times more often than in Crohn's disease patients. Excluding cancer, there were only two deaths directly due to ulcerative colitis, both in the first 2 yr after diagnosis.

An epidemiologic study of inflammatory bowel disease in Rochester, New York. Hospital incidence.

The epidemiological understanding of inflammatory bowel disease has been limited by the referral bases of most inflammatory bowel disease studies. The Colitis-Ileitis Study Group of Rochester, N.Y., developed a community-wide, computerized cumulative registry of all inflammatory bowel disease patients hospitalized at the 8 community hospitals for 1973-86. Clinical data were abstracted from each of the 1651 identified hospital charts. All of these patients resided in Monroe County (city and suburbs) and the 5 contiguous counties (Genesee/Finger Lakes Region, population 1,030,640). Of the 1651 hospital patients identified in the study, 1358 resided in Monroe County (Rochester and its immediate suburbs, population 702,238). Incidence, defined as time of onset of symptoms of inflammatory bowel disease, rose from baseline rates in the 1930s to peak in 1980 (Crohn's disease = 50.29/10(5) per decade, ulcerative colitis = 35.12/10(5) per decade) and declined through 1986. For Crohn's disease, the age-specific incidence rates peaked in the 20-29-yr-old group in each of the 5 decades studied. Ulcerative colitis seems to occur at all ages and may have a bimodal distribution. There was a period effect, with the 1970s having the highest incidence of Crohn's disease and ulcerative colitis for each age group. However, the age-specific incidence rate for Crohn's disease showed a 40% decrease in the 1980s compared with the 1970s in the 10-39-yr-old group (p less than 0.001). The age-specific incidence rate for ulcerative colitis showed a 50% decrease in the 1980s compared with the 1970s in the 10-49-yr-old group (p less than 0.001).