Table 1 Demographic characteristics of participating youth with SLE/MCTD and non-participants

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 youth^a, 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 level^b, 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 youth^b, 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 history^c in youth at interview, N (%)

9 (56)

–

–

 Depression

6 (38)

–

–

 Suicidal ideation

5 (31)

–

–

 Anxiety

8 (50)

–

–