Table 3.

During counselling—providers’ personalised risk score numbers and participants’ reactions

Providers’ personalised risk score numbers
Theme	Quote
Giving thresholds	Provider BA: The chemoprevention drugs are the next thing I want to talk about. That’s where this magic number comes in. So 1.66% makes you eligible to consider chemoprevention drugs. (Participant L)
Framing risk scores and risk reduction	Provider BC: If we say your lifetime risk is 36%, that means 36 women out of 100 will develop breast cancer. 1 in 3. That’s kind of high. If all 100 women take tamoxifen or raloxifene, that risk is reduced by 86%. Or there’s a residual 5% risk of getting breast cancer. So instead of 36 women out of that 100 getting breast cancer, only 5 out of 100 get breast cancer. Thirty-one out of that 100 don’t get told in their lifetime they have breast cancer. That’s big. (Participant Z)
Making comparisons	Provider BE: We use the [BCRAT] to help assess your risk—and I have the [BCRAT risk score], it’s all in that packet at the bottom. The (BCRAT) uses a variety of interchronologic history: your age, and whether you had atypical hyperplasia. The atypical hyperplasia lesion is the one that … is driving your risk the most. The [BCRAT] gives you a 5-year risk of breast cancer and a lifetime risk of breast cancer. As you see, your 5-year risk is estimated to be 1.8%, that’s compared with an average risk of 0.7%. Alternatively, the lifetime risk is 15.3% as compared to 7.5%. Basically, that says you're at approximately a double risk of developing breast cancer in your life. (Participant M)
Minimising a risk score: recognition of risk assessment tool limitations	Provider BA: So I would say you’re a good candidate for it were your risk high enough based on these numbers. I don’t know what your risk is really. I know you’re negative for the gene and you're not 1.6 or higher on this scale. So based on the data I have available you don't really fall into the category where it’s appropriate. However, I also know that you're in a little bit of a grey zone. (Participant A) Provider BB: I will quote you exact numbers—let me get you the exact numbers. I think it was about 1.4, so it was a very low risk. (Participant N)
Discussion in counselling: prompted by participant comfort and provider ambiguity	Participant U: So those who got there [into the study] … with atypical [biopsy findings], most likely had a— Provider BC: 86% risk reduction. Participant U: Over the 5-year? Or lifetime? Provider BC: Both, both. So that means we would reduce this [by] 86%, the lifetime risk of 30% down to … Participant U: By 86%? Provider BC: Well, down to 4–5%. Participant U AND Provider BC in unison: Which is lower than an average person. Participant V: We both understood [the previous provider] to say 40 to 50% [lifetime risk range]. Participant companion: 40 to 60%! Has that changed in the last year or two? Provider BC: No, that hasn’t changed. Participant V: So this is new information, … you’re saying on the high side 30%? Provider BC: Sure. Participant V: This is new information to me. I just felt like a 50% chance [told to me by the previous provider]. —I’m kind of like a ticking bomb!
Adding information to risk scores	Participant A: Does this number obviously go up as I age? Provider BA: As well, as well. Participant A: So as this number goes up to one(percent 5-yr risk), this [lifetime risk] number goes up higher? Provider BA: So you’re [at] one percent(5-yr risk), 20.6 [percent lifetime risk]. So I’m a little bit on the fence about this. Participant A: I’m wondering if this is the right time to start it, or next year if we revisit it, is that the best time to say, ‘As you’re approaching forty, you can come back and start [taking tamoxifen]’?