Table 1 Characteristics of patients with rheumatologic disease reported by patients and parents
Patient Characteristic | Patient Report, N = 123 | Parent Report, N = 324 |
|---|---|---|
Rheumatologic diagnosis | ||
Juvenile idiopathic arthritis (JIA) | 50 (41) | 160 (49) |
Juvenile dermatomyositis (JDM) | 43 (35) | 130 (40) |
Systemic lupus erythematosus (cSLE) | 30 (24) | 34 (11) |
Immunosuppressive medications ever takena | ||
Conventional disease-modifying anti-rheumatic drugs (DMARDS) | 114 (93) | 293 (90) |
Biologic DMARDS | 65 (53) | 143 (44) |
Glucocorticoids (oral, intravenous or intra-articular) | 113 (92) | 256 (79) |
Active disease status (Y/N) | 68 (55) | 167 (52) |
Visual analog score of disease-related health | 3.6 (1.8, 6.2) | 2.9 (1.3, 5.1) |
Disease duration, years | 8 (5, 12) | 5 (2, 8) |
Age, years | 19 (16, 23) | 13 (10, 17) |
Age group | ||
8 to 11 | 0 (0) | 112 (35) |
12 to 17 | 46 (37) | 145 (45) |
18 to 24 | 77 (63) | 67 (21) |
Female | 115 (94) | 235 (73) |
Race | ||
Asian | 8 (7) | 10 (3) |
Black or African American | 3 (2) | 15 (5) |
White | 96 (78) | 264 (81) |
Other | 16 (13) | 35 (11) |
Hispanic/Latino ethnicity | 15 (13) | 37 (12) |
Household income above federal poverty line | 99 (80) | 288 (89) |
Highest household education level | ||
Below College | 35 (28) | 62 (19) |
College Degree | 56 (46) | 136 (42) |
Advanced Degree | 30 (24) | 126 (39) |
Primary insurance for patient | ||
Public | 19 (15) | 49 (15) |
Private | 76 (62) | 252 (78) |
Other | 8 (7) | 17 (5) |
None | 1 (< 1) | 6 (2) |
Location | ||
Northeast US | 34 (28) | 56 (18) |
Midwest US | 22 (18) | 77 (25) |
West US | 34 (28) | 94 (27) |
South US | 25 (20) | 65 (21) |
Canada | 1 (< 1) | 7 (2) |