Table 2.
HRQoL survey results by age group at enrollment
| Surveys | n (%) | Median (range) |
|---|---|---|
| Adult surveys (n = 131) | ||
| EQ-5D Visual Analog Scale (range 0 [worst] to 100 [best]) | 120 (92) | 80 (20-100) |
| EQ-5D Health Index Score* (range 0 [worst] to 1 [best]) | 86 (66) | 0.88 (0.43-1) |
| FACT-An (range 0 [most fatigue] to 188) | 126 (96) | 156 (33-181) |
| PROMIS SF-7a (mean, 50; SD, 10; higher is worse) | 60 (46) | 52.3 (29.4-80.3)† |
| Pediatric surveys (n = 123) | ||
| PedsQL 4.0 (range 0 [worst] to 100 [best]) | ||
| Parent proxy | 86 (70.0) | 83.5 (25-100) |
| Child self-report | 61 (49.6) | 82.6 (33.7-100) |
| Peds-FACIT-F (range 0 [most fatigue] to 52) | 50 (40.7) | 70.4 (31-80) |
| PROMIS Fatigue Child SF-10a (mean, 50; SD, 10; higher is worse) | ||
| Child self-report 10a | 36 (29.3) | 41.6 (30.3-65.7) |
| Parent proxy report 10a | 48 (39.0) | 46.3 (34.1-69.2) |
*
EQ-5D Health Index Score could only be analyzed for participants from the United States, Germany, and The Netherlands.
†
Median T score (range).