A novel approach to increase awareness about hereditary colon cancer using a state cancer registry

• Published in: Genetics in medicine Vol. 12; no. 11; pp. 721 - 725
• Main Authors: Lowery, Jan T., Axell, Lisen, Vu, Kieu, Rycroft, Randi
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.11.2010
• Subjects: Awareness; cancer-registry; colon cancer; Colonic Neoplasms - genetics; Humans; Informed Consent; Lynch syndrome; Patient Education as Topic - methods; Registries; Surveys and Questionnaires; colon cancer; Lynch syndrome; cancer-registry
• ISSN: 1098-3600; 1530-0366
• DOI: 10.1097/GIM.0b013e3181f1366a

The aim of this project was to conduct educational outreach about hereditary colon cancer to a targeted high risk population identified through a state cancer registry. Individuals who met one of the first three Bethesda criteria guidelines were identified through the Colorado Central Cancer Registry. The physician of record received a brochure, survey and form to provide written consent to contact patient(s). Cases were mailed an educational brochure, initial and follow-up survey. Five hundred seventy-five cases and 412 physicians were identified; 81% provided consent. Ninety percent of physicians felt the registry should provide this information to at-risk patients. Twenty-three percent of the cases returned the survey. Cases were generally glad to get the information. Only four cases reported concern. The majority agreed the cancer registry should send the information, however most preferred their physicians be consented first. At follow-up, 20 cases reported having or intending to have a risk assessment. Response from physicians and cases was positive, suggesting that targeted outreach using cancer registries, in combination with physician notification, may be a viable approach to educational outreach about cancer genetics. A proportion of cases sought risk assessment, suggesting that mail-based outreach may be effective in increasing uptake of information and/or genetic services.