Descriptive characteristics of a colon disease family registry at an urban hospital

Background: Hospital registries are an important component of cancer screening efforts of individuals and communities. This paper describes the structure and goals of a Colon Disease Family Registry at a metropolitan hospital. Patient characteristics, differences between gastrointestinal diseases among probands, subjective distress in relation to perception of colorectal cancer, and quality of life were examined. Methods: Participants were patients with colorectal cancer (CRC), familial adenomatous polyposis (FAP), hereditary nonpolyposis colorectal carcinoma (HNPCC) and inflammatory bowel disease ulcerative colitis (UC) and Crohn's disease representing a range of colonic diseases. A total of 630 probands were recruited into the registry and administered a questionnaire. Results: Of the 630 probands, 198 (31.4%) were diagnosed with CRC, 36 (5.3%) with FAP or HNPCC and 272 (43.2%) with UC or Crohn's. The majority of all three groups had some level of college education, was white, and reported a household income greater then $70,000. The Impact of Event Scale score was found to be of notable significance when categorized by relation to proband (p < 0.01) and proband diagnoses (p ≤ 0.000). On the quality of life item, the largest difference was between FAP or HNPCC and UC or Crohn's without CRC. Conclusion: Subjective distress scores were higher for CRC probands in comparison to probands with other colorectal diseases. Quality of life was relatively high for all probands. Psychological distress should be explored in more depth and more frequently to screen for any concomitant psychiatric disorders like post-traumatic symptoms that have been linked to a cancer diagnosis.