Table 2 Summary of motivations at different stages for learning lynch syndrome status (N = 75; Bolded % indicates most common endorsements)
THEMES: Reasons and motivations to learn about Lynch Syndrome (LS) and obtain screening status | Topic: Initial Reactions - General motivations to know LS status % (n) | Topic: Step 1 - Motivations to have Tumor Screening % (n) | Topic: Step 2 - Motivations to have Genetic Test % (n) |
|---|---|---|---|
“family knowledge” – important to inform blood relatives | 68% (51) | 41% (31) | 61% (46) |
“knowledge is power” – necessary and important health knowledge for self | 67% (50) | 63% (47) | 96% (72) |
“prevention and detection” – helpful for identifying and preventing possible future cancers or reoccurrences | 64% (48) | 56% (42) | 56% (42) |
“treatment and surveillance” – helpful for possibly informing treatment decisions and monitoring actions | 55% (41) | 49% (37) | 53% (40) |
“helpful for future research and patients” – help with science and other similar patients | - | 11% (8) | 5% (4) |
“explain personal and/or family cancer history” – helps fill in possible knowledge gaps or curiosity as to “why” | - | 5% (4) | - |
“provider recommendation” – important for conveying importance of learning LS status and fostering follow-through | - | - | 16% (12) |
“seek additional research and information” – conduct own information gathering to further understanding and actions | - | - | 9% (7) |
“attending additional appointment” – not a concern or barrier for obtaining follow-up genetic testing | * | * | 87% (65) |
“privacy and documentation” – not a concern or barrier for LS status to be documented in medical record | * | * | 88% (66) |