Table 5 Summary of PROMs prioritized by family/caregivers and patients
Measures | Family/caregivers | Patients | Quotes | ||
|---|---|---|---|---|---|
Prioritization | Re-ranking | Prioritization | Re-ranking | ||
PedsQl | 5 | 7 | 6 | 7 | “I think there is more important values to rank higher than pediatric then that one at that point at this point as its too general”. (Family/Caregiver) “I would lower down the pediatrics one because me personally when I went through that question it kind of felt a bit surprising I just I didn’t find myself like relating to many of the questions related to elementary”. (Patients) |
Kidscreen 10 | 10 | 4 | 9 | 9 | “It’s a short, quick 10 questions, and the physical activity and energy are good questions. There’s a lot of good ones regarding, relationships with parents and peers, school functioning”. (Family/Caregiver) |
SDQ | 6 | 8 | 8 | 8 | (Family/caregiver felt SDQ should swap with CBCL) |
CHQ | 4 | 10 | 10 | 10 | “I agreed with that CHQ one just lowered down just because it was so general and broad that I and a lot of questions, too I think, I felt like it was. It should be lower on the on the scale”. (Family/Caregiver) |
CBCL | 7 | 6 | 4 | 6 | “It covers a lot and the aggressive and rule breaking behaviour is different than the other. Lots of questions so, obviously there’s a lot of little things that you need to click or mark off, so thought that it covered a broad spectrum of items that you would need to look at for a child’s behavior. It should be replaced with Strength and difficulty one” (Family/Caregiver) |
“I get bored doing those. I put. I think the child behavior check was lower because it was like 100 questions like I could not because if it’s too long, then you’ll just start like answering the questions to get it over with”. (Patients) | |||||
SCARED | 2 | 2 | 5 | 5 | No discussion |
SCAS | 8 | 5 | 7 | 4 | “I am quite surprised about SCAS being ranked so lower. It is more specific, covers Obsessive compulsive and covers a physical injury, fear which is very important to consider as the self harm is on the increase especially girls are self harming”. (Family/Caregiver) |
BDI | 9 | 9 | 2 | 2 | “I choose BDI number two because they found like the questions like, I guess it’d be like a medium like size, like kind of question, and to the point and its relevant to me as I suffer a lot with depression”. (Patients) |
RCAD 25 | 1 | 1 | 1 | 1 | ‘I rated Number One was that it was RCAD, because it’s a fairly short and quick measure. I think it covers a lot of questions, I guess they cover a lot of about Anxiety as well as depression in one measure.’ (Family/Caregiver) |
‘I struggle with anxiety and depression most of my childhood, so RCAD measures both in one questiionaire. So, it’s a short, quick and relevant measure’. (Patients) | |||||
YP-CORE | 3 | 3 | 3 | 3 | “I think, like the YP Core like question. There it is the 10 like questions. One, right? I find it like to be like pretty effective in like getting like the right points in a like quick a way. So, like since people like my feel differently about like filling in questions, I still think the YP core is like an important one. A lot of they go over to us”. (Patients) |