Hereditary Cancer Awareness Project

Basis for the Project

Approximately 3% of colon cancers and 10% of breast and ovarian cancers diagnosed in the U.S. are attributed to Lynch syndrome (LS) and hereditary breast and ovarian cancer syndrome (HBOC), respectively. According to Centers for Disease Control and Prevention's Office of Public Health Genomics, detection of HBOC and LS and intervention following evidence-based guidelines, like the National Comprehensive Cancer Network® (NCCN) guidelines, has the potential to reduce both morbidity and mortality. However, these desired outcomes hinge on physicians steering the appropriate patients to cancer genetic services, which depends on factors like physicians’ familiarity with genetics and risk assessment.

Background and Objectives

This project is funded by the Division of Cancer Prevention and Control of the Centers for Disease Control and Prevention (CDC) and is an extension of ongoing monitoring and evaluation work performed by ScreenWise. The primary intent of this project is to provide vital information for the control and/or prevention of hereditary breast, ovarian, and colorectal cancer, and to assist in program development and evaluation. This project is a public health surveillance, non-research activity and is not designed to develop or contribute to generalizable knowledge.

In this project, information from the Oregon State Cancer Registry (OSCaR) will be used to identify cancer survivors who fit referral to cancer genetic services for HBOC or LS based on NCCN guidelines.

Informational letters will be sent to:

Cancer survivors who fit referral to cancer genetic services guidelines, and
Reporting clinicians of these cancer survivors.

Letter recipients, both cancer survivors and reporting clinicians, will be asked to participate in a short survey.

This project has four objectives:

Conduct a survey of letter recipients to better understand knowledge of hereditary cancers, facilitators and barriers to cancer genetic services, access of cancer genetic services, and family communication of genetic risk.
Increase awareness of hereditary cancer syndromes, risk reduction, and resources among cancer survivors who fit criteria for referral to genetic services, and aid family communication.
Increase awareness of hereditary cancer syndromes, risk reduction, and resources among cancer reporting clinicians with patients who fit criteria for referral to genetic services.
Facilitate communication between cancer survivors who fit criteria for referral to genetic services and their cancer reporting clinicians, to increasing appropriate referral to genetic services.

Procedures

Identify cancer survivors who are at higher risk of having either HBOC or LS and appropriate for referral for genetic services based on NCCN guidelines.

Identify individuals diagnosed from 2012 through 2014 with the following conditions that, according to the NCCN Guidelines Version 1.2017 Breast and/or Ovarian Cancer Genetic Assessment, put them at a higher risk for having HOBC:

invasive or ductal carcinoma in situ breast cancer <50 years,
triple negative breast cancer <60 years,
two breast cancer primaries at any age,
male breast cancer at any age,
ovarian cancer (including fallopian tube and primary peritoneal) at any age, or
pancreatic cancer and breast cancer at any age

Identify individuals diagnosed from 2009 through 2014 with the following conditions that, according to the NCCN Guidelines Genetic/Familial High-Risk Assessment: Colorectal, Version 2.2016, put them at a higher risk for having LS:

colorectal or endometrial cancer <50 years,
multiple cancers in colon, endometrium, stomach, ovaries, pancreas, ureter and renal pelvis, biliary tract, brain, or small intestine

Obtain contact and cancer data from OSCaR about all of the above mentioned cancer survivors.

Create and review educational letters. ScreenWise staff have created educational letters specific to the above-mentioned groups based on whether they have a high risk for HBOC or LS. Each of the four letter packets contains information about HBOC or LS, genetic counseling with board-certified genetics specialists in Oregon, coverage options for genetic counseling/testing, cancer risk reduction options, and the survey.
Send educational letters to the identified cancer survivors and their provider, if known.
Analyze and report survey data. This survey will gather information about participants’ demographics, understanding of hereditary cancer, as well as barriers, facilitators, and use of genetic services. Survey results will be analyzed for trends [see “Data Analysis” section].

Confidentiality and Records Management

Identifiable information collected during this project will not be printed, except for the envelope address labels. Identifiable information collected during this project will remain in a limited access folder accessible only to project personnel (including the ScreenWise Program Analyst, Genetics Coordinator, and Epidemiologist) and will not be located in the same location as the responses to the surveys. Some participants may choose to be contacted for follow-up surveys. These individuals will be given a unique identifier that will allow project staff to briefly connect the participants identity with their responses for the purposes of completing additional data entry. No identifiers will be entered in the system. To ensure confidentiality: (1) only individuals who choose to be contacted for follow-up will be assigned a unique identifier, (2) identifiers will never be entered into the de-identified database containing survey responses, (3) identifying information will be destroyed upon completion of the project. Identifying information will be kept strictly confidential; no information that could identify the participants will be used for any publication or publicity purposes.

Individually identifiable health information will be protected with reasonable administrative, technical, and physical safeguards to ensure its confidentiality, integrity, and availability and to prevent unauthorized or inappropriate access, use, or disclosure.

Risks and Discomforts

Participants may find some of the information in the educational letter and questions in the survey to be uncomfortable. Participants do not have to answer any survey question. A participant’s choice of whether to answer or not will not affect their being in the project.

Benefits

There are no direct benefits to the recipients. However, receipt of the educational letter is intended to be an intervention and recipients may take steps to learn about their specific risk of developing future cancers and may take action to reduce their risk and/or identify developing cancers early. Survey participants may be further encouraged to take action. Incorporation of survey results will improve ScreenWise communication with high-risk individuals and will improve future program educational material.

Published aggregate results will benefit society by better understanding barriers and facilitators of cancer genetic services and follow up procedures in Oregon. A summary of this survey, including results, is anticipated to be posted on this webpage by September 28, 2018. This summary will not include any personal information.

Data Analysis

ScreenWise will analyze the data using standard quantitative and qualitative methods and report findings on the aggregate data, as well as summaries of survey questions and their correlations. Quantitative analyses (Chi Square tests and logistic regression) will be conducted using SPSS and STATA statistical software. A Geographic Information System will be used to analyze distance traveled to genetics services. In the small amount of qualitative analyses, a content-analysis method to distinguish significant themes will be used. Reports on findings will also include a program evaluation conducted in accordance with CDC guidelines and healthcare provider education recommendations. This summary will not include any personal information.

Project Materials

General Fact Sheet

Hereditary Cancer Awareness Project Fact Sheet (pdf)

Hereditary Breast and Ovarian Cancer (HBOC) Materials

Lynch Syndrome (LS) Materials