Results of open-ended survey assessing concerns and research preferences of patients, families, and friends of those with pediatric rheumatic diseases.
| Juvenile Myositis | Juvenile Arthritis | cSLE | |
|---|---|---|---|
| No. respondents | 138 | 57 | 47 |
| Parent, n (%) | 106 (77) | 53 (93) | 26 (55) |
| Patient, n (%) | 15 (11) | 2 (3.5) | 15 (32) |
| Other caregiver, n (%) | 17 (12) | 2 (3.5) | 6 (13) |
| Reported concerns | No. times concern reported* | ||
| Symptom-related | |||
| Pain management | 5 | 16 | 5 |
| Mental health | 4 | 11 | 2 |
| Effects of the disease on organs | 0 | 0 | 8 |
| Calcinosis/rash | 4 | 0 | 0 |
| Uveitis | 0 | 5 | 0 |
| TMJ-related concerns | 0 | 4 | 0 |
| Fatigue | 0 | 3 | 3 |
| Gut health | 0 | 3 | 0 |
| Growth/weight concerns | 0 | 3 | 0 |
| Long-term outcomes | |||
| Long-term health/prognosis | 35 | 19 | 8 |
| Chance of remission | 8 | 3 | 0 |
| Cure | 7 | 6 | 7 |
| Quality of life | 0 | 6 | 4 |
| Medication-related | |||
| Use of alternative therapies | 1 | 10 | 3 |
| Current medication side effects | 4 | 8 | 4 |
| Medication administration concerns | 0 | 6 | 0 |
| Long-term medication side effects | 35 | 21 | 3 |
| Improved/tailored treatment plan | 5 | 6 | 2 |
| Healthcare delivery | |||
| Improving testing to measure disease activity | 3 | 0 | 0 |
| Discovery of new treatments | 2 | 17 | 5 |
| Improved awareness among healthcare professionals and public | 2 | 5 | 3 |
| Medical expenses/insurance costs** | 5 | 6 | 4 |
| Disease onset and flare | |||
| Etiology | 1 | 14 | 5 |
| Triggers for flare | 32 | 4 | 4 |
| Risks from sun exposure | 3 | 0 | 0 |
| Prevention of disease onset/progression | 0 | 2 | 0 |