Table 1.
Characteristics of CARRA Registry participants diagnosed with childhood-onset systemic lupus erythematosus by level of individual data missingness (N = 766)
| Overall | ≤10% Missing (N =688) |
>10 % Missing (N = 78) |
|
|---|---|---|---|
| Variable | N (%) | N (%) | |
| Demographics | |||
| Sex assigned at birth | |||
| Male | 106 (14) | 97 (14) | 9 (11) |
| Female | 660 (86) | 591 (86) | 69 (89) |
| Gender | |||
| Male | 107 (14) | 98 (14) | 9 (12) |
| Female | 650 (86) | 586 (86) | 64 (88) |
| Other | 1 (0) | 1 (0) | 0 (0) |
| Missing | 8 | 3 | 5 |
| Age, mean (SD) | 14.2 (3.0) | 14.2 (3.0) | 14.2 (3.0) |
| Socioeconomic Factors | |||
| Race and ethnicity | |||
| Asian, Native Hawaiian, or Pacific Islander | 87 (12) | 80 (12) | 7 (11) |
| Hispanic | 196 (26) | 178 (26) | 18 (28) |
| Middle Eastern or North African | 9 (1) | 7 (1) | 2 (3) |
| Native American, American Indian, or Alaska Native | 7 (1) | 6 (1) | 1 (2) |
| Non-Hispanic Black, African American, African, or Afro-Caribbean | 210 (28) | 196 (29) | 14 (22) |
| Non-Hispanic White | 195 (26) | 180 (26) | 15 (24) |
| Race not previously mentioned | 13 (2) | 13 (2) | 0 (0) |
| Multiracial | 33 (4) | 27 (4) | 6 (10) |
| Missing | 16 | 1 | 15 |
| Household income | |||
| <$25,000 | 104 (16) | 98 (16) | 6 (11) |
| $25,000-49,999 | 122 (19) | 119 (20) | 3 (5) |
| $50,000-74,999 | 78 (12) | 78 (13) | 0 (0) |
| $75,000-99,999 | 59 (9) | 59 (10) | 0 (0) |
| $100,000-150,000 | 68 (10) | 67 (11) | 1 (2) |
| >$150,000 | 66 (10) | 61 (10) | 5 (9) |
| Prefer not to answer | 154 (24) | 114 (19) | 40 (73) |
| Missing | 115 | 92 | 23 |
| Parent/Guardian educational attainment | |||
| Less than high school | 68 (11) | 63 (11) | 5 (10) |
| High school or GED | 172 (27) | 159 (28) | 13 (26) |
| College | 279 (44) | 259 (45) | 20 (40) |
| Graduate School | 108 (17) | 96 (17) | 12 (24) |
| Missing | 139 | 111 | 28 |
| Insurance status | |||
| Private | 316 (44) | 293 (44) | 23 (41) |
| Government-assisteda | 318 (44) | 294 (44) | 24 (44) |
| Other, including non-US insurance | 72 (10) | 67 (10) | 5 (9) |
| No Insurance | 20 (3) | 18 (3) | 2 (4) |
| Missing | 40 | 16 | 24 |
| Clinical Factors | |||
| SLEDAI-2K, mean (SD) | 7.1 (7.3) | 7.0 (7.3) | 8.1 (7.7) |
| SDI, mean(SD) | 0.3 (0.8) | 0.3 (0.8) | 0.4 (1.0) |
| Lupus nephritis | 390 (51) | 353 (51) | 37 (48) |
| Age at symptom onset, mean (SD) | 12.7 (3.1) | 12.7 (3.1) | 12.8 (3.0) |
| Age at first pediatric rheumatology visit, mean (SD) | 13.0 (3.0) | 13.0 (3.0) | 13.0 (3.0) |
| Disease duration from symptom onsetb, mean (SD) | 1.5 (1.8) | 1.5 (1.9) | 1.3 (1.5) |
Missing not otherwise noted: age (n=8); SLEDAI-2K (n=90); SDI (n=12); age of symptom onset (n=8); age of first pediatric rheumatology visit (n=8)
a
Medicare, Medicaid, Military Health Care, State-specific Plan (non-Medicaid), Indian Health Services
b
Disease duration defined as time from symptom onset to enrollment
GED: Graduation Equivalent Degree; SD: Standard deviation; SDI: SLICC damage index; SLEDAI-2K: Systemic lupus erythematosus disease activity index