Table 4.

Quotes to illustrate ‘Strength and weaknesses of health-related quality of life/fatigue measures’

Quote no.	Quote
Q1	‘The questions [on the Rheumatology Module] were definitely relevant’. (C8_14y)
Q2	‘I would really feel comfortable in filling out this one…because if she had these things then going to school, mixing with children, she would never, you know if she’s in pain and all these things’. (P10_14y)
Q3	‘I like that one [Rheumatology Module] the most. That one is a good one. I think that is more about the actual lupus and then I guess that’s [PedsQL Inventory] about your mental health. They are both about different things, so they both go their own ways’. (C8_14y)
Q4	‘It’s the best one because it’s easy answering with the faces…They are easy to understand’. (C4_11y)
Q5	‘That question’s a bit stupid because having lupus doesn’t make me feel happy. But it doesn’t make me feel sad…I wouldn’t say how lonely do you feel because of lupus. Like, I’m not sad, I’m not lonely, but I’m not happy’. (C6_18y)
Q6	‘It is important, because fatigue is a main issue when you’ve got lupus, anyway, isn’t it?’ (P11_15y)
Q7	‘Fatigue in itself when they’re struggling with it is a worrying part of it for a parent. Kids have huge energy levels. When that’s gone and they are suffering with fatigue, it’s really worrying. For doctors to take that aspect seriously is a good thing, from our point of view’. (P7_9y)