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Table 2 Comments from focus group interviews

From: Communicating prognosis to women with early breast cancer – overview of prediction tools and the development and pilot testing of a decision aid

Category Explanation Quotes
Comprehension At first sight, the presentation of data from studies using outdated chemotherapy regimens is not comprehensible to women. This view changed during the discussion. The fact that women receive support from decision coaches was highly appreciated and therefore no further modification was necessary. “When reading this brochure, I understood what happened to me back then.”
The women comprehended that in certain age groups, “breast cancer doesn’t account for many deaths”.
“It cannot be an important piece of information that something is not being used anymore”. “Why should I be interested in this information?” The information was found to be “outdated”, “of no great importance/relevancy”, “dead weight”. “It might be interesting from a scientific perspective, but it doesn’t help.” One patient had also the hope “that recent chemotherapy regimens are better”.
“I had disposed of this as being too old. However, after the explanation from the experts, it looks very different. But now I find it interesting.” “At first I thought: [data] from the last century? What is that supposed to be? But now I understand. It gives you a clue.”
Length/extent The women judged the length of the decision aid differently.
They had concerns that the amount of information is too much just after having received the diagnosis. However, the decision aid consists of two parts and only the first part contains the information relevant for making a treatment decision.
“When I was first flicking through the pages, it didn’t overburden me. With the size of the brochure and the front size, it makes you want to read it.”
“The structure is very well done. Clearly arranged, everything is well presented so that I as a layperson can understand it.”
“When you have just received your diagnosis, it is an awful lot to read.”
“For me, this would have been too much [information].”
Acceptance Most of the women appreciated the decision aid and were very happy to be invited to participate in shared decision-making. However, some women were opposed to dealing with content addressing mortality. “What a pity that I didn’t have this brochure last year. I found it very good and very helpful.”
“I didn’t have this information”
“I can’t say that I knew as much back in 2007 as is written in this brochure.”
“I wish I had had such a decision aid”.
“When I read ‘decision aid for women’ I thought: Oh, that’s great, I can take part in decision-making.”
“You need lots of support and the courage to oppose to the doctor and to say ‘I don’t want this’ (…) and that with brochures like this the inhibition threshold is reduced by saying ‘you’ve got a right to take part in the decision”. The information on prognosis was found to be “helpful”, “calming” and “lifting up spirits/invigorating”.
“(I) don’t want to know all this”.
“I don’t know if I would have wanted to know how many women die.”
“When I read: ‘death due to breast cancer’ – oh my god, I closed the thing [brochure]. I don’t want to know about that. When I read that, I feel queasy.”