Table 4 Phase 3 findings

Breast cancer patients (n = 18)

Comments on BCP website

“I wish I’d had this before”

“I think there's a lot of good information there. And it would have been helpful to have it at the time of diagnosis.” (POSFG1P7)

“I have been accessing information on the website very frequently. And I found it very comprehensive, very informative.” (POSFG2P3)

“That bag of stuff was really overwhelming. I mean, you try, you pull it out and you looked at it. Then you put it in your cupboard. At least I did. This (website), it's so much easier. … You know specifically what you're looking for” (POSFG2P7)

Structure of site

“Because when I was diagnosed, I was given the booklets, the pamphlets, the everything, just right here. You don't need that. You need a gradual step-by-step to where you can go back, like, to the website, and just refresh yourself as you journey along”

“And I did find it extremely well-organized. I like the one page – every time you look something up it's kind of one page, you don't have to spend a lot of time scrolling through, looking for bits of information here and there.” (POSFG2P4)

Balance of amount and type of information (“Fear factor”)

“I like this part of it where it's just brief, it doesn't get too in-depth because it would be, if you're just starting out, newly diagnosed … it would be too stressful…too stressful knowing too much … It might scare people, the fear factor might come in more.” (POSFG1P2)

“I think it's very useful, especially the symptoms. But the thing is, I always have some fear when I go there because, it still reminds me, oh I used to be a patient.” (POSFG1P6)

Comments on patient booklet

“ I think it's good because it's everything in a nutshell, instead of you getting these little business cards” (POSIP2)

“Because when I was diagnosed, I was so overwhelmed that I couldn't even remember half of what had happened … to have something where you can write everything down.” (POSFG1P3)

“It's very useful. All the useful information is there, right, starting from entering the hospital to where everything is located and what are the procedures, everything is very comprehensively explained.” (POSFG2P6)

Comments on paper-based SCP and Rx summary tool

“I did give her the form. She didn't have any reaction, I didn't expect her to.” (POSFG1P5)

“The other thing is, if you're seeing more than one doctor for any other illness, I just take it (summary and SCP) with me, and they're always very pleased to get it, and make a copy and put it in the file…. Whether it's my GP or whoever. Like, I see a couple of other doctors for different things, they were very pleased to have that.” (POSFG2P7)

Emphasizing health and wellness

“So if you have something for healthy living, after this one … like a weekly menu or what you can take, how it helps you with your day-to-day life, and how if affects your body…” (POSFG2P5)

Relationship with FP

“Actually I didn't see my family doctor until maybe 6 months late. I finished all the treatment. I went there for something else … I don't feel my family doctor contributed a lot, I mean, to this process.” (POSFG2P6)

“…so I'm going to take the information to him, and talk to him and see if he's interested. He said you know, 'I wasn't part of your treatment, I wasn't part of the whole thing.' So really, I got the impression that well, ‘why do you want to involve me now,’ kind of attitude.” (POSFG1P3)

Family physicians (N = 5)

Comments on FP website

“Here’s what I need to do, ABCD”

“Okay, cognitive dysfunction, potential problems, so how do I identify it? And then what do I do next because here if I open this article, um, and this is interesting but it’s not like boom, boom, boom where do I go with you know, what do I do next, right?” (POSIFP2)

Suggestions for further improvement

“(…) if we could print a symptom score and then just hand it out to the, hand it to the patient … oncologists (who) do that I think in their waiting rooms right? They have people fill out symptoms scores in the waiting room, you give it to the doctor and then we know ‘oh okay, this is how you’re doing right?’ So, it saves time because these questions are just as easily, in fact the symptom scores are validated in the way we ask questions randomly is not validated right? We’ll forget stuff, we don’t frame it in a way that necessarily is consistent and so …that’s something I think that would be helpful …” (POSIFP1)

Comments on paper-based SCP and Rx summary tool

“So the concept is good … the follow up thing I liked, and then here’s the symptoms of recurrence. … stuff could jump out a bit more than it does … (you) might consider boxes for certain things, red flags [Um hmm], things to watch for and then you have like a box in red or something … but otherwise it’s good.” (POSIFP1)

Relationship with FP

On involving the FP in follow-up care: Transitioning

“But that transition, that’s what makes the patient more comfortable you know, they, so they could be seeing the oncologist I don’t know every 3 months and then us maybe you know, every 6 months and then gradually they are seeing us every 3 months and the oncologist every 6 months and then just slowly fading out right? So that I think that would make it easier, it would make it easier for patients, it would make it easier for us. It’s just a question of timing it you know, right? But I, I haven’t seen that thus far right? Really now it’s kind of all or nothing, either we’re doing everything or good-bye right?” (POSIFP4)

OHCPs (n = 3)

Feedback on website

General commentary

“…I think you’ve got a lot of the major resources that people would need to get connected to, then the physicians themselves probably don’t know about either so I think it’s great that you’re replicating it on both sides. It’s looking good.” (POSIOHCP3)

Balance of amount and type of information (“Fear factor”)

“ … do you tell everybody everything that might possibly happen or do you provide them that information once you’ve had the conversation in the context of the treatment they’re going to have? This is where people get scared…” (POSIOHCP3)

“‘these could potentially occur, but will not necessarily happen to you, we will closely monitor you, and help you cope with possible side-effects.” (POSIOHCP1)