Box 3 Quotes regarding the pharmacological treatment

“yes, I lost control over myself and it (diarrhoea) came up and I had to go to the bathroom” Patient7 “yes, during a whole time, we didn't dare to go anywhere, and if we had to be somewhere, for example a funeral, then we wouldn’t take any (anti-fibrotic drug). Yes, that was, that was not bearable” Informal caregiver7 “if we had to be somewhere the next day, then I would not take them (anti-fibrotic drug) in the evening and then it was solved” Patient7

"[…] No, sometimes you forget it (to take in Nintedanib) and most of the time you forget it when you have to do something unusual. You have to go away or uhm we go away for a couple of days (laughs) then I think I can take them with me, but then I think oh I forgot. That is normal.” Patient5