Table 2.

Representative quotes for the most frequently endorsed impacts

Impact	Example quotes from participant responses
Dietary restrictions and requirements	“It’s a huge impact. […] the stress about it is the fact that everything that you put into that one salad, even if it’s vegetables […] ends up being like, that one meal puts you out for your entire days’ worth of grams of protein, the allotted allowable amounts. Then you’re sitting there, well, I’m still hungry, but I cannot eat any more food.” (Adult patient 300-007-3) “Having to live […] with a very restricted diet and having to drink a terrible formula that’s disgusting. I mean really, that’s the biggest impact that I have.” (Caregiver 300-001-2) “The biggest thing is just the hunger. Just trying to find ways to not always be hungry all the time.” (Adult patient 300-026-3)
Treatment burdens	“[My parents] were having to spend $2000 per month to keep the medication that I needed. They were making payments on that after I had moved out of the house and gone to college and gotten a job.” (Adult patient 300-008-3) “It’s a heavy burden. You can’t just pick up and go somewhere. Everything has to be planned, you know, calculated.” (Caregiver 300-001-2)
Psychological or emotional	“It’s like the depression and the anxiety. I think that’s one of the biggest hurdles for people with this disorder, is accepting it. Because part of the reason I was off diet, […] I didn’t want that constant reminder […] about the fact that I’m constantly different.” (Adult patient 300-24-3) “The most bothersome is the anxiety, just worrying about medical things. […] It’s just the thought that my heart isn’t working properly or that I’m going to have a stroke or some of this because I’m aware of what can happen right here if not treated.” (Adult patient 300-020-3)
Education	“Just being able to focus and keep up, being able to follow multipoint directions independently. […] It might impact his job performance when he just, his brain’s just not working right. He’s just foggy.” (Caregiver 300-022-2)
Social	“She does feel different, […] for example, with her brother, he’s like, so is [patient] ever going to be able to taste meat? Is she ever going to be able to taste fish?” (Caregiver 300-016-2) “It becomes hard for her to speak up in a group or with her peers, because I think she’s worried she’s not going to be able to remember words.” (Caregiver 300-012-2)