Table 3.
Theme | Patient quotes on treatment preferences |
---|---|
Efficacy |
“It would be lovely to be able to go to the swimming pool with my children without having to worry about it. I do hold back now. It’s all about (my) appearance,” (DKM1) “It doesn’t matter if I still have a small spot here and there. It’s not about having immaculate skin, it’s about not having it in places that bother me, like my hands, nails, face, and joints.” (DKF3) “The most important thing for me is that the spots disappear, that I’ll become healthy. I want to look like an ordinary person” (FLF2) “If this [psoriasis] would go away completely and stay away for a long time, that would be extremely nice. As I said about my [affected] joints, when you’re into music and playing it yourself, it would be a pretty wild reason to have to give that up. And of course, not always itching and flaking skin everywhere, yes, that would be a great change to my everyday life.” (FLM2) |
Durability |
“You hope that (biologic treatment) is effective for as long as possible. It’s hard that you always have to try out these drugs and then they say that this isn’t right for you after all.” (FLF3) “I thought a lot about whether I’ll have to try something new again in 2–3 years. It would mean a lot to me if you just found that one thing that works for you rather than going through lots of different things.” (DKF1) “Metoject [methotrexate] was effective at first but then lost effect. I was very satisfied with it in the beginning. Once it started working, my life was so much easier to live… All my skin issues were gone. But then it stopped working. Everything came back and I was very depressed for a while.” (SEF2) “You get your hopes up every time, then further down than where you came from” |
Speed of response |
“It’s important to see an effect quickly. You sometimes hear of people who started a treatment [for psoriasis] and simply lost faith in it because they couldn’t see an effect… The first couple of times I used all those creams, I really felt it took a long time [approximately a month]. I felt like nothing happened at all and I had long discussions with my mom about whether I should take it or not… I quickly got tired of it, that’s for sure.” (DKF1) “[Speed of response] is important because it encourages you to continue. It gives meaning to the treatment and motivates you to go forward” … “A quick effect would be in one month and two months would be ok. Because of the motivation, it would be nice to see some effect in a couple of months.” (FLF1) “[How fast it works] is very important, to feel that it works and that it is worth having these injections. … If it works well, then you’ll see fast results. Then you are motivated to continue.” (SEF1) |
Safety | “I’m scared now because I’ve had so many problems with MTX. I’m not sure what biologic treatment means. I do not know what it is, and I fear that I will get the same kind of side effects that I got with MTX. What will it do to my body? Imagine if I get even more problems than I have today. Right now, I’m unsure, and think that maybe light therapy is what I should take. At least then I do not get side effects.” (NOM2) |
Convenience |
Speaking of self-injecting biologic treatment every two weeks: “then I almost don’t have to think about it anymore. I want for it [treatment] to do so that I don’t notice this disease anymore at all.” (DKM1) “It takes a long time for the skin to absorb [topicals] and I always had a whole ritual around it. I couldn’t just take a shower and go to bed like a regular person. Instead, I needed to lotion my entire body which might take an hour. And it was never absorbed, so I had to sleep with a plastic wrapper or a robe because the towels and bed linen got bleached by the lotion. It [biological treatment] is not something I have to spend time on every day, keep up and be reminded of. I’ll take this injection pen and then it’s over and done with. It’s once a week or every two weeks.” (SEF2) “The fact that you administer it at home by yourself once a week, I mean, it doesn’t affect everything else, that sounds very good. I don’t need to make appointments several times a week. It’ll be less work for me.” (SEM3) “If you could get rid of applying cream all over that would be very positive.” (FLM2) “An injection is so much faster compared with those two hours a day applying cream. In that sense, it’s surely acceptable compared with topical treatment.” (FLM3) |