Respondents to Baseline Survey (n = 77) | Respondents to Follow-Up Survey (n = 31) | Respondents to Follow-Up Survey with Visit in Last Year (n = 20) | ||
---|---|---|---|---|
n (%) or Median [IQR] | ||||
Race | ||||
White | 66 (86) | 25 (81) | 17 (85) | |
Black or African American | 8 (10) | 2 (6) | 0 (0) | |
Asian | 1 (1) | 1 (3) | 1 (5) | |
Ethnicity | ||||
Not Hispanic, Latino, or Spanish Origin | 72 (94) | 29 (94) | 19 (95) | |
Puerto Rican | 3 (4) | 2 (6) | 1 (5) | |
Other Hispanic, Latino, or Spanish Origin | 2 (3) | 0 (0) | 0 (0) | |
Female | 64 (83) | 29 (94) | 18 (90) | |
Age (years) | 19 [17–20] | 20 [20–22] | 20 [20–22] | |
Education | ||||
9th grade | 2 (3) | 0 (0) | 0 (0) | |
10th grade | 9 (12) | 0 (0) | 0 (0) | |
11th grade | 13 (17) | 0 (0) | 0 (0) | |
12th grade, high school graduate, or GED | 13 (17) | 6 (19) | 5 (25) | |
Some college | 33 (43) | 14 (45) | 10 (50) | |
College graduate | 7 (9) | 11 (35) | 5 (25) | |
Primary Rheumatologic Diagnosis* | ||||
Juvenile Idiopathic Arthritis | 52 (68) | 22 (71) | 15 (75) | |
Uveitis (idiopathic) | 2 (3) | 1 (3) | 0 (0) | |
Chronic Recurrent Multifocal Osteomyelitis | 3 (4) | 0 (0) | 0 (0) | |
Systemic Lupus Erythematosus | 8 (10) | 3 (10) | 1 (5) | |
Mixed Connective Tissue Disease | 4 (5) | 2 (6) | 1 (5) | |
Sjögren’s | 3 (4) | 1 (3) | 1 (5) | |
Juvenile dermatomyositis | 3 (4) | 2 (6) | 2 (10) | |
Other vasculitis | 4 (5) | 0 (0) | 0 (0) | |
Length of time seeing doctor | ||||
At least 6 months but less than 1 year | 2 (3) | 0 (0) | 0 (0) | |
At least 1 year but less than 3 years | 20 (26) | 2 (6) | 2 (10) | |
At least 3 years but less than 5 years | 19 (25) | 11 (35) | 5 (25) | |
5 years or more | 36 (47) | 18 (58) | 13 (65) | |
Frequency of visits in past year | ||||
None | 0 (0) | 11 (35) | 0 (0) | |
1 time | 17 (22) | 7 (23) | 7 (35) | |
2 times | 24 (31) | 6 (19) | 6 (30) | |
3 times | 17 (22) | 4 (13) | 4 (20) | |
4 times | 13 (17) | 3 (10) | 3 (15) | |
5 or more times | 6 (8) | 0 (0) | 0 (0) | |
Health status | ||||
Excellent | 10 (13) | 3 (10) | 1 (5) | |
Very good | 18 (23) | 8 (26) | 7 (35) | |
Good | 32 (42) | 16 (52) | 11 (55) | |
Fair | 15 (19) | 4 (13) | 1 (1) | |
Poor | 2 (3) | 0 (0) | 0 (0) |