Table 2 Examples of participants’ quotes

 Increasing awareness of psychosocial problems

At least the questionnaire is more profound than the usual how-are-you-questions. It seems as if they take you a bit more seriously now than they did before (68 years old man).

 Improving communication

Well, I think it is very nice. The questions are much more everyday questions. That makes it much easier to explain and describe how your epilepsy actually is. Because you try and you try to explain how it is and how it feels to your close ones and to the doctors, but it is so hard to explain in a way that normal people can imagine how your body experiences it (28 year old woman).

 Increasing understanding of symptoms and disease

It gets you thinking. It makes you consider things. Because I actually didn’t know that you could lose your sexual drive because of the medicine and that stuff. I surely didn’t know that before I saw the questionnaire (56 year old woman).

Before I start to fill it in, I stop and think carefully about why the questions are there in the first place. They must be linked to the epilepsy. It isn’t like you have to find five errors [as in an intelligence test] or something like that. So, all the questions must have something to do with the epilepsy, right? And that makes you aware of symptoms that you must be attentive to (60 year old man).

 Facilitating change in health behavior

There are things you do that you don’t link to the epilepsy by yourselves, but they can actually have an influence. So, in that way it can actually kind of guide you. [For example], maybe I should try and sleep a bit longer (28 year old woman).

I actually think that just filling in the questionnaire and just by ticking those boxes made me more conscious, and then I said to myself “okay now I need to take on responsibility, because it is my life.” (48 year old man).

 Strengthening autonomy, flexibility and freedom

I really think it is very very good alternative. I especially appreciate the fact that I actually get to control it myself (…). I really like the part that I can control my follow-up by saying “Do you know what? Now I need help.” (24 year old woman).

I actually think it is all right [the fact that there is no routine visit anymore]. Because, I really don’t feel that I suffer from epilepsy. I actually don’t feel like that. I feel well in my everyday life, so I kind of forget that I have epilepsy. And sometimes I try to tell myself, that it is just something that they have made up. I don’t like the epilepsy, and this makes me feel less ill (66 year old man).

 Inducing feelings of rejection and disconnection

When you write that you have lost your libido and you have gained weight, then what happens? Well, if I had been sitting in front of the nurse, then I would expect that she maybe could help me in some way (…) But if I just write it in the questionnaire, then what happens? – Nothing. Because I have never heard anything back, and I have been writing these things time after time (56 year old woman).

I demand to know how my disease is developing! I want to know, is it okay? I would also like to have the possibility to ask some questions (…) I would really like to have the opportunity to tell how I feel and how I experience the side effects, and I don’t think that I have those opportunities now (23 year old woman).

They never [expletive] react to it. So, I wonder, why do they ask about it in the first place? Honestly, why do they ask? Well, they don’t care about it at all. The only thing they react to is the medicine stuff. Why the [expletive] should I fill it in, then? It is nothing but a waste of time (58 year old woman).

But I really think they ought to react to it - to follow up on the problems. Otherwise it is just like you disappear (47 year old woman).

You somehow feel that you are abandoned from the system when you only have this [lays his hand on the questionnaire] (60 year old man).

 Incomprehension of purpose of PRO-based follow-up

It is a survey. (…) I see it as some kind of data collection, a method for some nurses and doctors to become smarter on the disease (63 year old man).

Well, they can’t use my part in itself. I think it is more in general that they use it. To see if people who take these medicines and who have epilepsy, to see if they have a direction, I think. So, I don’t think, that they use exactly my questionnaire, except as one in many (32 year old man).

 PRO measures are perceived as being too standardized and negative

But I really don’t think all those things have anything to do with how I have epilepsy (23 year old woman).

There are questions or areas that I personally think the questionnaire is lacking (…) In that way it can be difficult to fill it in, because I don’t think it fits 100% to my person (39 year old man).

P: It is terrible, just terrible. Honestly, I must say, it is terrible to fill in. Because I don’t want to have anything to do with it any more.

I: Do the questionnaire remind you of your epilepsy?

P: Yes, it does, and the fact that it has been much worse, and it make me think; what if it gets worse again? (…) I really feel like they start to pull something up, and for some of the questions I think; why is it their concern? (67 year old woman).

There are so many negative questions, so many around depression and suicide thoughts and that sort of stuff. It is very negative. And I think; what shall I do with that? Because I didn’t think I had those troubles, but when they are presented in that way in questionnaire, you actually come to be a bit negative yourself (32 year old man).

 Lack of confidence in own ability to assess health status and need of contact

Who is to say that I’m right in my responses? (26 year old woman).

Well, we are not supposed to be doctors, we are not supposed to assess our own health, because there are some people who are professionally educated to do that (39 year old man).

It is hard to assess, because do I have a need to be contacted? Well, it is really difficult to assess, because I’m not the expert in this game (60 year old man).

I thought to myself; well, is this really a proper reason for asking for contact. Because you do know that there is a need for cost-savings, so I wouldn’t want to intrude or be demanding. So, I feel that there must really be a proper reason, but you can be very insecure if the reason is proper enough, and that is hard. (26 year old woman).