Table 3 Patient’s quotations

Knowledge and understanding

A 72-year-old male has a 30 % chance of having a stroke regardless, but if I didn’t take the Coumadin, it would be a 70 % chance of having one. So I’m taking medication to avoid the stroke (Patient, Canada) [35].

There was a sticker on one of the medication boxes that said you shouldn’t take aspirin with this … but the specialist said you take half a Solprin™ …so you get sort of a conflicting thing (Patient, Australia) [30].

Information to reinforce anticoagulation use

The specialist didn’t give me this [book] … he said that you could get this book and I had to go to two pharmacists to get one …I think it could be better communication … they just gave me the book (Patient, Australia) [30].

I didn’t get anything … only very sketchy in [hospital]… I haven’t received anything extra at all (Patient, Australia) [30].

Impact of the therapy on daily living

“I had to go get the blood drawn. It was such a pain to get the paperwork from the doctor’s office and go to the lab to get it drawn, and then you have to wait to talk to the doctor on the phone. He told you whether or not to continue it or to change the dosage or what I had to do. And then you have to go back again to see if it was the proper dose. It was a pain (Patent, US) [33].

I will only drink one glass of wine a day. I like a glass of wine. They say just go easy on the single malt, and stuff like that…There wasn’t any special [instructions regarding diet]. We like good food, and we eat a good, balanced diet. I like seafood, and I love fish, and I like the odd steak. I try to stay off butter. I’m taking Becel® just now, which I don’t really like, but I try to stay off the butter and cooking with all the white sauce, and butter sauce, and stuff like that (Patient, Canada) [35] .

Balance of benefits and downsides

Before anything the fact of going to the hospital so often, they are crammed with people, and you have to spend the whole afternoon there… just for simple shot […] though it’s a real sacrifice (Patient, Spain) [37].

‘With a stroke you’re finished . . .seen lots of my family and friends with a stroke—it’s terrible’ (Patient, UK) [32].

Roles in decision-making and therapy management

Well, then, I’ve already said I’ll accept what the doctor says. If the doctor thinks the other option is better, well then, I’ll keep the other option ‘(Patient, Spain) [37].

When I went into the [clinic] to see my doctor, they admitted me to the cardiac emergency, and they kept me there all day … I was in for just about a week. … and when I was discharged the doctors explained that they were putting me on to certain medications, and Coumadin was one of them (Patient, Canada) [35].

Satisfaction with therapy

I think they’ve been 100 %. From my cardiologist to the family physician and to the pharmacists, because they’re just amazing. (Patient, Canada) [35].

I certainly get interactions with different things, but I haven’t been told . . . [I took] antibiotics for this bad flu that I had . . . no, no I hadn’t [been warned beforehand] and I was a bit surprised, but once you get the bad [INR] reading then [the doctor] says, “Oh yeah that was caused by such and such”. But you already knew that. (Patient, Australia) [29]