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Increasing Awareness About Hereditary Colorectal Cancer

Colorado Central Cancer Registry

Colorectal cancer is a significant cause of disease and death in the United States. About 2% of all colorectal cancer cases are due to an inherited colon cancer susceptibility syndrome known as Hereditary Nonpolyposis Colorectal Cancer (HNPCC), or Lynch syndrome. People with Lynch syndrome have a lifetime risk of colorectal cancer between 52% and 80% compared with 5%–6% in the general population, but they can reduce their risk by following recommended guidelines for colorectal cancer screening. Not everyone who is at risk for Lynch syndrome is identified, so they do not receive cancer risk assessment, genetic testing, and counseling about risk reduction.

The purpose of this project was to increase awareness about hereditary colorectal cancer through a targeted outreach program for doctors and at-risk patients identified through the Colorado Central Cancer Registry (CCCR). A secondary aim of this project was to determine the feasibility of using a cancer registry to identify at-risk patients and conduct an outreach program.

Study Participants

This project was conducted in collaboration with researchers from the Colorado School of Public Health and the University of Colorado Cancer Center. At-risk patients were defined as those who were diagnosed with colorectal cancer between 2001 and 2005 and met one of the first three Bethesda Guidelines—

  • They were younger than age 50 when they were diagnosed with colorectal cancer.
  • They were diagnosed with metachronous or synchronous colorectal cancer or other HNPCC-related cancers (ovarian, endometrial, stomach, pancreas, biliary tract, brain, ureter and renal pelvis), regardless of age.
  • They were younger than age 60 when they were diagnosed with a type of colorectal cancer that exhibited microsatellite instability (MSI)-high histology (mucinous/signet ring, medullary types).

Everyone who was 18 years of age or older and met these criteria were included (575 people).

How the Study Was Done

Following doctor consent, patients were mailed an educational brochure written in lay language that described hereditary colorectal cancer, who may be at risk, what cancer risk assessment is, and who might benefit from cancer risk assessment. The brochure also provided contact information for all cancer genetic counselors in Colorado and a toll-free number to speak with a counselor at the University of Colorado Cancer Center.

Patients also were sent a short survey that asked for their age, gender, year of diagnosis, and residence (urban or rural). Other questions sought feedback about the brochure, how the patient felt about getting the information (glad, angry, or concerned), and whether they thought the information was useful. Patients were sent a follow-up survey to find out if the brochure motivated them to get a cancer risk assessment. Responses were anonymous.

Doctors were given a card that outlined the Bethesda Guidelines and Amsterdam Criteria for identifying at-risk patients and screening recommendations for people with Lynch syndrome. They were asked to complete a survey to provide feedback on the educational brochure, their practices for providing information about cancer genetics to patients, and their opinion about the state cancer registry conducting outreach on this topic.


Through this project, more than 400 doctors and 180 colorectal cancer patients received information about hereditary colorectal cancer. The response was positive overall.

All but one patient thought the information in the brochure was clear and easy to understand, and 71% thought the information was useful. When asked how they felt about receiving the information, 77% were glad, 42% wanted to know more about genetics and cancer, and 10% expressed worry or concern. No patients were angry about receiving this information from the registry. More than 90% of patients thought that the registry should send out information about hereditary cancer, but 71% preferred to have their doctor involved in the process. About one-third of patients said they had or planned to have risk assessment since receiving the materials, and nine already had undergone risk assessment.

Most doctors thought the cancer registry should provide education to at-risk patients either with (30%) or without (60%) doctor consent. Only 3% of doctors did not support the registry doing this type of outreach.

Results from this project suggest that using a cancer registry to target and conduct an outreach program would be well-received and effective for increasing awareness and uptake of genetic services.

Lowery JT, Axell L, Vu K, Rycroft R. A novel approach to increase awareness about hereditary colon cancer using a state cancer registry. Genetics in Medicine 2010;12(11):721–725.

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