Table 1 Interview Protocol
Domain | Questions |
|---|---|
Demographic and clinical characteristics | Age, race, ethnicity, sex, marital status, cancer status, and insurance status. Familial pathogenic variant was determined via medical record. |
Discussion of Lynch Syndrome with a provider | ● Did you discuss the diagnosis of Lynch Syndrome with a healthcare provider? ▪ If so, who did you discuss this with? |
Ongoing management and surveillance | ● Based on your test result, what clinical follow-up was recommended for you? ▪ Who made this recommendation? ● For Probands: Since being diagnosed with Lynch Syndrome, what cancer screening(s) have you gotten? ● For Family Members: Since receiving your test results, what cancer screening(s) have you received? ▪ What made it easier for you to get cancer screening(s)? ▪ What has made it more difficult for you to get cancer screening(s)? |
Education and information regarding Lynch syndrome | ● Are you satisfied with the amount of information that you have received about Lynch Syndrome? ▪ Why were you satisfied with the amount of information you received? ▪ Why were you not satisfied with the amount of information you received? ● After hearing a list of examples of ways participants might continue to learn about new Lynch syndrome developments. They were asked: ▪ Which of the examples I mentioned would be the most helpful for you? ▪ Which of the examples I mentioned would be the least helpful for you? |