Results from final ranking survey. Basic demographics and top 7 priorities from each group, ranked from highest to lowest priorities.
| JM | Juvenile Arthritis | cSLE | |
|---|---|---|---|
| Respondents | N (%) | N (%) | N (%) |
| Parent | 274 (75) | 39 (89) | 1 (3) |
| Patient | 38 (10) | 3 (7) | 31 (97) |
| Other | 53 (15) | 1 (2) | 0 (0) |
| Total | 365 (100) | 43 (100)† | 32 (100) |
| Disease duration, yrs | |||
| < 2 | 99 (27) | 3 (7) | 0 (0) |
| 2–6 | 113 (31) | 25 (58) | 4 (13) |
| 7–10 | 69 (19) | 7 (16) | 7 (22) |
| 11–14 | 40 (11) | 3 (7) | 3 (9) |
| ≥ 15 | 44 (12) | 5 (12) | 18 (56) |
| Top Priorities | JM* | Juvenile Arthritis | cSLE* |
| 1 | New treatments | Genetic/environmental etiology | Genetic/environmental etiology |
| 2 | Flares (triggers, prevention, treatment) | Personalized medicine | Quality of life |
| 3 | Medication side effects | Medication side effects | Medication side effects |
| 4 | Standards to measure disease activity and/or remission | Growth and development | Pain management |
| 5 | Genetic/environmental etiology | Flares (triggers, prevention, treatment) | Long-term health/prognosis |
| 6 | JM complications (i.e., rash, calcinosis, lipodystrophy) | New treatments | Fatigue |
| 7 | Risk of other autoimmune diseases | Pain management | Flares (triggers, prevention, treatment) |