TABLE 1.
Participant demographics, medical information, and HRQOL
| Variable | n (%) or M ± SD | Range |
|---|---|---|
| Youth Age | 13.17 ± 3.09 | 8.00-18.60 |
| Youth Gender | ||
| Female | 25 (40) | |
| Male | 38 (60) | |
| Youth Race and Ethnicity | ||
| Black/African American | 61 (97) | |
| Asian | 1 (2) | |
| Hispanic or Latino/a | 1 (2) | |
| Youth SCD Genotype | ||
| HbSS or HbSβ0 | 43 (68) | |
| HbSC and HbSβ+ | 20 (32) | |
| Youth Hemoglobin | 9.77 ± 1.92 | 2.68-13.50 |
| Youth SCD-Related Treatment | ||
| Chronic Transfusions | 8 (13) | |
| Hydroxyurea | 29 (46) | |
| Youth Stroke History | ||
| Overt Stroke | 3 (5) | |
| Silent Cerebral Infarction | 7 (11) | |
| Youth Hospital Utilization | ||
| Hospitalizations | 0.70 + 1.12 | 0-5 |
| Emergency Department Visits | 0.84 + 2.29 | 0-17 |
| Caregiver Age | 39.30 ± 8.68 | 24-63 |
| Caregiver Gender | ||
| Female | 57 (90) | |
| Male | 6 (10) | |
| Caregiver Race/Ethnicity | ||
| Black/African American | 60 (95) | |
| Asian | 1 (2) | |
| Hispanic or Latino/a | 1 (2) | |
| Other | 1 (2) | |
| Caregiver Relationship to Youth | ||
| Mother | 53 (84) | |
| Father | 5 (8) | |
| Othera | 5 (8) | |
| Caregiver Education: Highest Grade Completed | 13.78 ± 2.42 | 11-20 |
| Youth HRQOL | ||
| Total Score | 65.41 ± 17.28 | 18.60-99.42 |
| Worry 2 | 79.37 ± 28.41 | 0-100 |
| Communication 1 | 72.22 ± 25.53 | 0-100 |
| Worry 1 | 70.32 ± 26.24 | 0-100 |
| Treatment | 69.33 ± 20.97 | 21.43-100 |
| Pain and Hurt | 68.39 ± 20.43 | 19.44-100 |
| Emotions | 67.26 ± 31.94 | 0-100 |
| Communication 2 | 61.64 ± 32.36 | 0-100 |
| Pain Impact | 55.85 ± 24.17 | 7.50-100 |
| Pain Management | 55.44 ± 31.58 | 0-100 |
Note. HRQOL = Health-Related Quality of Life.
a
“Other” caregivers included 1 grandmother, 1 stepmother, and 3 legal guardians.