Table 1.
Demographic characteristics of participating youth with SLE/MCTD and non-participants
| Participants | Non-participants | p-value | |
|---|---|---|---|
| N = 16 | N = 34 | ||
| Age of youth in years, mean (SD) | |||
| At initial survey | 15.0 (3.4) | 15.8 (2.8) | 0.25 |
| At interview | 17.0 (3.6) | – | – |
| Female gender of youth, N (%) | 13 (81) | 30 (88) | 0.51 |
| Female gender of parent, N (%) | 11 (69) | – | – |
| Race/ethnicity of youtha, N (%) | 0.60 | ||
| White | 10 (63) | 14 (41) | |
| Black | 4 (25) | 14 (41) | |
| Asian | 1 (6) | 2 (6) | |
| Hispanic/Latino | 1 (6) | 2 (6) | |
| Other | 0 (0) | 2 (6) | |
| Highest household education levelb, N (%) | 0.14 | ||
| Less than college | 1 (6) | 8 (24) | |
| College and above | 15 (94) | 26 (76) | |
| Disease duration of youth in years, median (IQR) | |||
| At initial survey | 0.9 (0.3, 2.9) | 2.9 (1.3, 4.8) | 0.01 |
| At interview | 3.0 (2.4, 5.0) | – | – |
| Initial positive mental health screen in youthb, N (%) | 6 (38) | 11 (32) | 0.72 |
| Depression | 4 (25) | 6 (18) | 0.54 |
| Suicidal ideation | 4 (25) | 3 (9) | 0.12 |
| Anxiety | 5 (31) | 6 (18) | 0.28 |
| Years between initial survey and interview, mean (SD) | 2.1 (0.3) | – | – |
| Presence of mental health historyc in youth at interview, N (%) | 9 (56) | – | – |
| Depression | 6 (38) | – | – |
| Suicidal ideation | 5 (31) | – | – |
| Anxiety | 8 (50) | – | – |
aRace/ethnicity was categorized into as the mutually exclusive groups; other includes American Indian/Alaska Native, Native Hawaiian/Pacific Islander and other)
bData for these variables was obtained at time of the previous study. Highest household education level was categorized as either 1) less than college (includes incomplete college or less) or 2) college (includes completed associate, bachelors or advanced degree) and above. A positive depression screen was defined as a score ≥5 on the PHQ-9. A score of ≥1 on item 9 of the PHQ-9 questionnaire was considered indicative of suicidal ideation and also considered a positive depression screen regardless of total PHQ-9 score. A positive anxiety screen was defined as a score totaling ≥25 on the SCARED
cA mental health history was defined as the presence of depression or anxiety symptoms at the time of screening for the previous study and/ or mental health referral and/or treatment (per subject report or medical record) in the interim between the previous study and the interview