Table 3. Focus group results and intervention modifications based on learner verification elements.
| Learner Verification Element | Summary | Sample quotes | Modification (if indicated; based on focus group data) |
|---|---|---|---|
| Attraction | Some women thought that the booklet was too long; Almost all of the women liked it and described it as “pretty,” “informative,” and “easy to read” | “I thought it was kinda long” “I think it's informative and it helps…” “I like the cover; you have a variety of ethnic groups and ages and little genetic gene things here and whatever and the breast cancer thing and the colors are nice.” “My thought on page 2 is that it's kinda bland 'cause it is just two paragraphs or written words; there's no pictures bringing it up or graphics like the other one and that's another reason why the bullets might work well on that second paragraph because it will make it a little bit less intimidating if you don't like to read.” “…and I think that the family tree is a good thing at the beginning…also 'cause…in the visual, that really says, wow, or like this is me and then yea, that was my Aunt Sally and then this…you kinda see just like that so that's kind of like a good thing at the beginning whereas this sounds more complicated, more like you've already had more knowledge about what's going on…” “I think it's a nice visual…for me, because I'm a visual person, I think it would stimulate me to be thinking about…care and…my history, my mother's history, my family's history and where I wanna go with this.” “One thing that stands out to me is that first, I didn't notice the headings on the side when I was reading, I didn't see what the headings were and then I realized I had switched into pelvic, breast to pelvic.” “I like the silhouette though; it's kind of an interesting graphic.” |
Deleted sections that the women thought were confusing and irrelevant to making a decision about genetic counseling (e.g., screening and surveillance measures for BRCA-positive women, the section about other types of genetic/genomic tests) |
| Comprehension | Many of the women felt that the section trying to clarify the difference between genetic genomic tests (e.g., estrogen receptor/progesterone receptor status and Oncotype DX) and BRCA testing was confusing Many of the women had questions related to the insurance process Many of the women thought that the idea of a family tree was very helpful, also to put all cancers in the family in perspective; especially male risk Women felt that they learned the following through the booklet:
|
“…the top part's talking about the doctor referring you for genetic counseling and then the bottom part [states] these tests could be run and you're like what are those?” “…one drew the blood and another office was the one trying to get it pushed through the insurance and then…the blood wasn't drawn here so it was confusing…” “…as far as gathering the family tree information, any cancers, even if you don't think it's applicable, it needs to be included…” “An easy read; it was easy to read and not too overwhelming.” “I thought it was informative for me.” “I think it's well laid out and the…displays used to sort of explain certain areas were very helpful…” “I learned that BRCA1, BRCA2 is also connected to ovarian cancer which I did not realize…” “Yes, and what I see here is that you can ask for counseling during treatment or after treatment but what about before treatment so you know what…what avenues to take.” “…I mean, everything is spelled out for you so I don't know what I would wanna write down.” “I didn't actually didn't even know that there was counseling and testing until I got this book and looked through it and saw the difference; it's like, oh, ok, it must be counseling and then you go to testing if it's determined that you wanna move forward with the actual testing to see.” “Here they're giving you information if you wanna make an appointment but here, they look like they're signing a consent form.” “…A glossary would be fun.” |
Deleted section about other genetic tests Increased information about insurance coverage:
|
| Acceptability | The majority of women learned the following: genetic counseling was a separate process from genetic testing, there were more reasons to have the test done than to inform family, there was a relationship between breast and ovarian cancer All of the women liked the booklet format The majority learned that not all of the women were referred for genetic testing and the specific risk factors determining eligibility; however, these points came across only after reading the booklet |
“…as far as any repercussions [genetic testing] may have on your family…or even life…health insurance and different things; it's all covered in that [genetic counseling] session.” “…you're only going to remember a little piece of what they [say] …but hand me books …I can flip through it and then…write down notes to ask the next time I see somebody.” “It gives you a lot of information, the first section and I think it's needed; I think it is laid out nicely; I mean, it really tells you who was being referred for genetic counseling.” “I would see it; I can hold it; I can turn the pages…it prompts me to start thinking.” “I think if you provide as many websites as possible, it saves a lot of searching cause sometimes you run across stuff on the Internet you probably shouldn't be looking at.” |
No changes |
| Persuasion | The majority of women said that they understood now, in a way they had not before the booklet, that they could have genetic counseling to understand whether genetic testing was right for them Women felt that this booklet needed to emphasize when genetic counseling was needed to help understand how genetic counseling can help your children help explain who would benefit from genetic counseling to decide about testing advise that genetic counseling is available to help make a decision about genetic testing |
“…when I was reading it I felt like I had options; I kinda felt a little bit empowered that I had the option to have the counseling and the testing and make decisions from there.” “I think, for me, I would read it to help me decide if I wanted to, yeah; I think it would help me to make a decision; that's just how I am; I like to have all the information I need to have to make decisions.” “I put [genetic testing] off for a year because I didn't know what to expect…” “… it was letting you know about the genetics counseling, especially for me, what stood out the most when I took the time to read it was about the … the cost of the counseling and the testing.” “Call for an appointment.” “I see the information…like call to make an appointment but I don't see, most of the time, when I see things like that, I don't see additional information…so it's usually just a number…” “…I think that most women at this point have been through so many doctors; we know about the HIPAA and the confidentiality and you have to sign a release of information for anybody to get your information and short of any breach of…technology, it's pretty safe I guess.” |
Added information about when in the breast cancer diagnosis and treatment process genetic counseling was useful, and emphasized that this booklet was targeted to patients who already had a breast cancer diagnosis |