Table 3 Summary of concerns at different stages for learning lynch syndrome status (N = 75; Bolded % indicates most common endorsements)
THEME: Concerns or barriers that may prevent learning Lynch Syndrome (LS) status or obtaining LS diagnosis | 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) |
|---|---|---|---|
“no barriers” – generally no concerns or reasons to forgo learning LS status or follow through with screening steps | 64% (48) | 61% (46) | 41% (31) |
“worry and anxiety” – concern that knowing or learning information may generate needless stress for patient or prolong cancer journey | 35% (26) | 9% (7) | 4% (3) |
“unnecessary information” – given older age, lack of family history, cancer trajectory, personal beliefs, or mobility issues | 8% (6) | 3% (2) | 9% (7) |
“does not gain anything medically actionable” – if knowing LS status didn’t change anything about treatment options or surveillance or future actions | 5% (4) | - | - |
“cost challenges” – concern if high cost, or high co-pay, or not covered well or at all by insurance, lack of cost information generates hesitation | 4% (3) | 9% (7) | 79% (59) |
“impacts health insurance coverage” – concern LS diagnosis could impede ability to obtain future health insurance coverage | 4% (3) | 19% (14) | 12%; (9) |
“privacy concerns” – concern LS diagnosis could impact future care or services in future/ sensitive personal information | 4% (3) | 3% (2) | - |
“patient informed choice” – concern some patients may desire shared-decision making and consent for pursuing steps in screening | - | 12% (9) | 4% (3) |
“accuracy of testing” – concern over level of accuracy, certainty and trustworthiness of a potential LS diagnosis | - | - | 23% (17) |
“attend an additional appointment” – inconvenience of a second appointment may be a barrier for obtaining follow-up genetic testing | * | * | 13% (10) |
“no provider recommendation” – lack of provider recommendation regarding LS screening may limit interest or sense of importance | 3% (2) | 1% (1) | 9% (7) |