Table 3 Patient/parent-reported outcome measures

Global Assessment of Disease Activity (patient), n = 48

3.0 (1.8–5.3)

–

Global Assessment of Disease Activity (parent), n = 33

3.0 (1.0–7.0)

–

PROMIS Pediatric Global Health 7 (patient), n = 48

38.8 (33.6–42.1)

19 (39.6)

PROMIS Pediatric Global Health 7 (parent), n = 34

34.6 (29.4–37.9)

18 (52.9)

 CHAQ^b, n = 102

0.750 (0.030–1.875)

–

 PROMIS^cMobility (patient), n = 48

36.9 (32.9–48.4)

19 (39.6)

 PROMIS Mobility (parent), n = 33

32.0 (27.0–43.0)

22 (66.7)

 PROMIS Upper Extremity (patient), n = 31

35.4 (28.5–44.9)

16 (51.6)

 PROMIS Upper Extremity (parent), n = 28

23.5 (21.0–33.5)

20 (71.4)

 Pain Intensity Now (patient), n = 48

1 (0–4)

–

 Pain Intensity Now (parent), n-35

1 (0–3)

–

 Pain Intensity Past 7 Days (patient), n = 48

3 (1–6)

–

 Pain Intensity Past 7 Days (parent), n = 35

2 (0–6)

–

 Pain Frequency, # Days in Past 14 Days (patient), n = 46

5 (1–13)

–

 Pain Frequency, # Days in Past 14 Days (parent), n = 30

4 (0–14)

–

 PROMIS Pain Interference (patient), n = 40

55.7 (50.3–61.4)

15 (37.5)

 PROMIS Pain Interference (parent), n = 30

62 (51.5–66.5)

21 (77.8)