Table 1.
Demographic Information on Study Adolescent Cohort.
| n (%) | |
|---|---|
| Study site | |
| NIH | 147 (83.1) |
| Seattle Children’s | 30 (16.9) |
| Gender | |
| Male | 86 (48.6) |
| Female | 91 (51.4) |
| Age M (SD) | 15.1 (1.4) |
| Ethnicitya | |
| Hispanic/Latino | 22 (12.4) |
| Raceb | |
| White/Caucasian | 123 (69.5) |
| Black/African American | 26 (14.7) |
| Native American | 6 (3.4) |
| Asian | 8 (4.5) |
| Native Hawaiian/Pacific Islander | 2 (1.1) |
| Other | 20 (11.3) |
| Don’t know or did not answer | 8 (4.5) |
| Illness status | |
| Healthy | 35 (19.8) |
| Minor condition | 9 (5.1) |
| Significant, well-controlled | 80 (45.2) |
| Significant, not-well-controlled | 31 (17.5) |
| Significant, life-threatening | 22 (12.4) |
| Study typec | |
| Healthy controld | 39 (22.0) |
| Psychological condition | 14 (7.9) |
| Medical condition | 124 (70.0) |
| Functionalitye | |
| Able to do all/most activities | 87 (49.2) |
| Able to do few/no activities | 51 (28.8) |
| Don’t know or did not answer | 39 (22.0) |
| Previous research participation | |
| None | 98 (55.4) |
| 1–2 studies | 51 (28.8) |
| 3–6 studies | 17 (9.6) |
| >6 studies | 9 (5.1) |
Note. NIH = National Institutes of Health.
a
Self-defined.
b
Self-defined, participants could choose more than one race.
c
From protocol data.
d
Four adolescents had an illness, but were categorized as “healthy controls” because the research in which they were participating was not related to their illness.
e
Based on the parent’s response.