Table 3.
Patient/parent-reported outcome measures
| Global Assessments: | Median (IQR) | High symptom/low function scorers, n (%)a |
|---|---|---|
| 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) |
| Physical Function: | ||
| CHAQb, n = 102 | 0.750 (0.030–1.875) | – |
| PROMIScMobility (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: | ||
| 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) |
aProportion of patients with a high symptom/low function based on total number of respondents
bChildhood Health Assessment Questionnaire
cPatient Reported Outcomes Measurement Information System