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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.
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:
Letter recipients, both cancer survivors and reporting clinicians, will be asked to participate in a short survey.
This project has four objectives:
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.
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.
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.
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.
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