The purpose of the study is to see if our education materials help people at risk for Lynch syndrome decide about seeking genetic services. Untested relatives of patients with Lynch syndrome will be recruited to complete a baseline survey and will be randomized to receive either the an information letter or an information letter plus a booklet. Two follow-up surveys will be administered over the span of 6 months. Participants will also be invited to join an optional exit interview to provide feedback.
English speaking
at least 18 years old
have had genetic testing for Lynch syndrome (LS)
do not have a condition that would interfere with their ability to provide informed consent and complete study activities (e.g., cognitive dysfunction evaluated using clinical judgment during screening)
None
Parallel
Information Letter and Booklet
Behavioralan information letter with a booklet for at-risk families highlighting implications of family history, testing considerations, steps for genetic testing, and potential costs.
Information Letter
Behavioralan information letter with basic information about LS and implications of counseling and testing of LS, and a few websites for more information and locating genetic counselors.
Feasibility (recruitment and retention rates, completeness of assessment data)
Record the numbers of probands approached, probands enrolled, probands who provide contact information of at least one potentially eligible relative, relatives approached, enrolled, and completing each phase of the study. Calculate the percentage of complete data for those participants who complete each assessment period.
Use and attitudes towards the education materials
Assess the extent to which participants reviewed the information letter and booklet and their attitudes, likelihood of sharing the materials, feedback on the materials and impact on decisions, how the information should be delivered.
Scheduling and attendance of pre-test genetic counseling and/or genetic testing
Record whether participants scheduled or attended pre-test genetic counseling and genetic testing to calculate the proportion of genetic services uptake.
Scheduling and attendance of pre-test genetic counseling and/or genetic testing
Record whether participants scheduled or attended pre-test genetic counseling and genetic testing to calculate the proportion of genetic services uptake.
Psychosocial outcomes
perceived risk, stress, fear, and coping of LS, cancer worry, colonoscopy experience, family communication, decision conflict, factors influencing decisions, self-efficacy, information received, experience and perception of facilitators and barriers of seeking genetic services for LS, perceived stress, knowledge about LS and genetic services
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University of Alabama at Birmingham
Lead sponsor
National Cancer Institute (NCI)
Collaborator
