Table 1.
Patient demographics, clinical characteristics, and health-related quality of life and work impairment scores
| Demographic characteristics | Patients with SCD (N = 303) | |
|---|---|---|
| n | % | |
| Age, mean years (SD), median (IQR) | 34.37 (10.25) | 33.00 (27.00–40.00) |
| Gender | ||
| Female | 221 | 72.9 |
| Male | 81 | 26.7 |
| Non-binary/third gender | 1 | 0.3 |
| Racea | ||
| Black or African American | 270 | 89.7 |
| White | 15 | 5.0 |
| Asian | 2 | 0.7 |
| American Indian or Alaska Native | 1 | 0.3 |
| Native Hawaiian or other Pacific Islander | 1 | 0.3 |
| Multiple races | 6 | 2.0 |
| Prefer not to answer | 6 | 2.0 |
| Education | ||
| Less than high school or some high school | 18 | 6.0 |
| High school or equivalent (e.g., GED) | 39 | 12.9 |
| Some college, technical school, or associate’s degree | 136 | 45.0 |
| 4-year college degree (e.g., BA, BS) | 67 | 22.1 |
| Some graduate school but no degree | 12 | 4.0 |
| Graduate or professional degree (e.g., MBA, MS, MD, PhD) | 31 | 10.2 |
| Employment Statusb | ||
| Currently employed (working for pay) | 120 | 39.7 |
| Unemployed | 182 | 60.3 |
| Health insurancec | ||
| Private insurance | 106 | 35.0 |
| Medicaid | 134 | 44.2 |
| Medicare | 103 | 34.0 |
| Veterans Health Insurance | 2 | 0.7 |
| Other (other type of insurance not listed, uninsured, or unsure) | 37 | 12.2 |
| US region of residencea,d | ||
| Northeast | 34 | 11.3 |
| South | 167 | 55.5 |
| Midwest | 66 | 21.9 |
| West | 34 | 11.3 |
| Type of SCDb | ||
| Hb-SS | 156 | 51.7 |
| Hb-SC | 60 | 19.9 |
| Hb-S beta+ thalassemia | 20 | 6.6 |
| Hb-S beta0 thalassemia | 22 | 7.3 |
| Other or do not know | 44 | 14.5 |
| Health-related quality of life | Mean (SD) | Median (IQR) |
|---|---|---|
| ASCQ-Mee | ||
| Emotional impact | 46.57 (8.00) | 46.20 (41.20–51.50) |
| Social functioning impact | 47.00 (9.21) | 47.20 (40.40–52.20) |
| Stiffness impact | 46.54 (8.35) | 46.70 (42.70–51.00) |
| Sleep impact | 48.71 (6.54) | 48.20 (45.00–53.90) |
| Pain impact | 47.87 (9.48) | 47.10 (41.50–54.00) |
| Pain episode frequency | 49.05 (10.65) | 51.85 (44.07–55.73) |
| Pain episode severity | 51.11 (10.41) | 52.30 (45.28–59.31) |
| Work impairment | Mean (SD) | Median (IQR) |
|---|---|---|
| WPAI:SHPf | ||
| Absenteeism | 27.54 (29.04) | 20.00 (0.00–50.00) |
| Presenteeism | 47.19 (30.50) | 50.00 (20.00–70.00) |
| Overall work productivity loss | 55.19 (33.28) | 61.51 (28.89–85.00) |
| Overall activity impairment | 53.15 (28.88) | 60.00 (30.00–80.00) |
ASCQ-Me Adult Sickle Cell Quality of Life Measurement Information System; WPAI:SHP Work Productivity and Activity Impairment: Specific Health Problem, SCD sickle cell disease, SD standard deviation, IQR inter-quartile range
aData from 2 patients are missing; frequency based on available data (N = 301)
bData from 1 patient is missing; frequency based on available data (N = 302)
cMultiple response options allowed; frequency sums to > 100%
dRegions defined according to US Census Bureau
eHigher ASCQ-Me impact scores indicate better functioning. Higher ASCQ-Me pain episode scores indicate worse functioning
fHigher WPAI:SHP scores indicate greater impairment. Absenteeism scores were calculated for patients who were employed at the time of the survey (N = 118). Presenteeism and overall work productivity scores were calculated for patients who were both employed and reported working in the past 7 days (N = 114). Overall activity impairment scores calculated for all patients (N = 302; data from 1 patient is missing)