Table 3.

Representative quotes from concept elicitation interviews and combined concept elicitation and cognitive debriefing interviews

Topic area	Representative quotes
Effectiveness of current treatment	“It’s clear that the [treatment] is certainly working and I’m certainly seeing results because in the past when we have just attempted to go off of that medication even for a month, you can see drastically that those levels shoot right back up and not just a little bit. It’s usually a pretty significant increase in a short amount of time” “Well it seems to be controlling my levels. For one, it’s a one-time injection and although after the injection I’m sick for two to three days, the rest of the month I feel pretty good” “Well I think, why I don’t think it’s symptom wise is working very well is because I still experience the same, the sweats, like I get very hot, I get very anxious and these are ongoing where I’m on [treatment] or not” “Well, it doesn’t have quite, as far as I understand it doesn’t have quite the effect on this as some of the other treatments and the side-effects that it does have is significant for me so I’m getting a lot of side-effects on a medium level dose that’s, at best, moderately effective in keeping my IGF-1 in check”
Discomfort or reactions to injections	“It’s painful, it certainly is painful and the act of actually sticking it is, it hurts. However, it’s just a few seconds though” “It depends on the month, but on average mild discomfort for maybe a day or two, just injection site pain” “I get a lump, a little marble sized lump, but it doesn’t bother me” “No redness. A little bruising once in while if we hit a blood vessel” “Well when I first get it, it’s burning, it’s a burning feeling and it’s, it probably stays sore for that first day where it’s uncomfortable. So I don’t try, I try not to schedule a lot to do that day” “The itching probably lasts for a couple of days. The swelling lasts probably for about, I’d say about a week. The redness kind of goes away more of when the itching goes away”
Impact of treatment on emotional and social functioning	“The actual injection causes me quite a bit of anxiety now so emotionally it takes it tolls a few days beforehand when I am preparing myself, the fact that I have to schedule the appointment and go to the hospital, I don’t know, every time I have to go to the hospital it’s just a reminder, I mean that’s where I had my surgery, it’s where sick people go so it’s a constant reminder, going to the hospital, going in there that I’m sick and I have to keep coming here and I have to keep seeing a nurse” “It’s not just anxiety. It’s a fear of the future. In terms of, it does create anxiety and worry for me about the side-effects. I mean at this point after 24 or 26 or 28 shots the side-effects should be fairly predictable, but again I worry about that particularly if the disease process returns and my hope is that there’s a pill or something that’s more effective with the same amount of side-effects or less”
Satisfaction with acromegaly treatment (on a scale from 0 to 10, where 0 is not at all satisfied and 10 is extremely satisfied)	“Right now I would give it like a two or a three. If you talked to me three months ago I would have given it a zero, but I’ll give it a two or three right now just because it’s actually doing something. It took four years to do something” “I’d say 8. Because it works, it keeps the symptoms down and all” “I would say probably a nine. I’m satisfied with it and it helps and everything. The only two issues I have is the wear-off time and then the pain of the needle, but like I said I don’t really experience that because I have the medication that numbs it, but I still get anxiety about it” “I’m not really satisfied, maybe a five”