Table 8.
Cognitive interviews—sample caregiver quotes
| PEDI-CAT | |
| DA083 Using a TV remote control | Yeah, and that’s just because it’s, you know, appropriately, is a word that I would definitely add to that. […] I mean, he goes for the remotes all the time, but it’s more so just attention seeking, he’s not, you know, purposefully looking or changing the channel. (Caregiver of 16 year old) |
| DA098 Presses buttons to operate a key-pad such as a phone or ATM | Okay, so, again, this one I linked it—she presses it and she presses it easily but she doesn’t press it like well, you know, like, you know what I mean, like she knows that she’s like, oh a phone and I want to play with it or I want to do this… (Caregiver of 7 year old) |
| ABC-C | |
| Item 9. Talks excessively | Just because she does, you know, she doesn’t talk, but she says, you know “mama, baba,” things like that a lot. [laughs] (Caregiver of 15 year old) Zero…Because he doesn’t talk (Caregiver of 15 year old) |
| ADAMS | |
| Item 1. Nervous | …I’m not sure what the difference is between nervous and anxiety…. (Caregiver of 28 year old) |
| Item 7. Tense | I did not really know that one, so I gave it a zero…Because I did not know if it was like, your muscles “tense,” because he is tight but all the rest of these are like brain things….So I did not know if that was right or not. (Caregiver of 15 year old) |
| Item 10. Sad | Both #10 [sad] and #11 [worried] are like #1 [nervous]; it’s me projecting onto him all of that. So I think he’s not acting sad, but that’s not really—I mean, they’re asking me if it’s a behavior. So he doesn’t look like he’s behaving sad to me. So it’s kind of complicated. (Caregiver of 18 year old) |
| Item 23. Listless | “Listless,” I don’t know what that means. (Caregiver of 11 year old) |
| Item 5. Sleeps more than normal | Um, okay, that’s an interesting question because I will say a 5 because the issue of sleep is very important for Angelman syndrome families and their—their kids, uh, because they lack the sleep, so it is a big issue, it’s a 5, but, uh, she doesn’t have a problem over-sleeping. We wish that she will sleep more. [laughter] (Caregiver of 17 year old) Sleeps more than normal, uhh, that would be a godsend. Is it relevant in Angelman syndrome? I mean, if they started sleeping more than normal that could be like the best outcome that any medication could ever have. (Caregiver of 18 year old) |
| Morning Diary | |
| Night waking | Yes, because I was trying to think about, am I only supposed to be thinking about my night waking based on her night waking, or, am I thinking about my life, too? (Caregiver of 19 year old) Yes, because I wasn’t certain if it was asking about the subject or myself. (Caregiver of 14 year old) |
ABC-C Aberrant Behavior Checklist–Community, ADAMS Anxiety, Depression and Mood Scale, PEDI-CAT Pediatric Evaluation of Disability Inventory Computer Adaptive Test