Table 1.
Demographic characteristics
| Characteristic (N = 76) | Value |
|---|---|
| Demographics | |
| Age (years) (mean ± s.d.) | 17.0 ± 1.8 years |
| Gender | |
| Female | 71 % (54) |
| Male | 29 % (22) |
| Race | |
| Caucasian | 94 % (67) |
| African-American | 4 % (3) |
| Pacific Islander | 2 % (1) |
| Ethnicity | |
| Hispanic | 10 % (7) |
| Non-Hispanic | 90 % (29) |
| Parent > age 40 | 86 % (60) |
| Guardian education | |
| High school or higher | 86 % (60) |
| College and higher | 31 % (22) |
| Number of siblings (mean ± s.d.) | 2.2 ± 1.3 |
| Family member with a similar disease | 54 % (39) |
| Disease Associated Variables | |
| Disease duration (years) (mean ± s.d.) | 4.5 ± 3.3 |
| Diagnosis | |
| Juvenile idiopathic arthritis | 80 % (60) |
| Systemic lupus erythematosus | 8 % (6) |
| Juvenile fibromyalgia (primary or secondary) | 16 % (12) |
| Other | 28 % (21) |
| Taking medications | 84 % (64) |
| Routine labs required | 58 % (42) |
| Good self-reported understanding of disease | 94 % (68) |
| Good self-reported understanding of medications | 85 % (62) |
| Patient Education/ Life Skills and Behaviors | |
| Currently living with guardians | 99 % (75) |
| Currently attending school | 91 % (68) |
| Grade level currently attending | |
| 8th-10th grade | 35 % (24) |
| 11-12th grade | 47 % (32) |
| College | 18 % (12) |
| Summer Job (ever) | 57 % (43) |
| Have a driver’s license | 43 % (33) |
| Tobacco Use (yes) | 4 % (3) |
| Independence Outcomes | |
| Patient indicated he/she would call the doctor him/herself if not feeling well. | 10 % (7) |
| Patient reported he/she would call the doctor or pharmacy first if had no refills on medication. | 57 % (41) |
| Patient makes own routine doctor’s appointments. | 18 % (13) |
| Patient calls him/herself to cancel a doctor’s appointment if cannot make it. | 70 % (51) |
| Patient reports he/she takes medications as prescribed without someone reminding him/her. | 87 % (62) |