Table 1 Patient and caregiver demographics

Age (years)

M = 11.6, median = 12 (range 3–18)

Age (years)

M = 39.0, median 39 (range 26–52)

Gender

19 (70.4%) female

Gender

22 (84.6%) female

Race/ethnicity

26 (96.3%) African American

1 (3.7%) White

1 (3.7%) Hispanic/Latino

1 (3.7%) other

Race/ethnicity

24 (92.3%) African American

2 (7.7%) White

1 (3.7%) Hispanic/Latino

Sickle Cell Genotype

25 (92.6%) HbSS

1 (3.7%) HbSß⁰ thalassemia

1 (3.7%) don’t know

Relationship to individual with SCA

21 (80.8%) mother

4 (15.4%) father

1 (3.8%) aunt

Insurance

21 (77.8%) Medicaid

5 (18.5%) private

2 (7.4%) government program

1 (3.7%) Medicare

1 (3.7%) SCHIP

Education

3 (11.5%) less than high school

11 (42.3%) high school degree/GED

3 (11.5%) some college

9 (34.6%) college degree

Healthcare utilization

(last year)

 Hospitalizations

 ED visits

 Doctor’s office visits

M = 2.6, median = 2 (range 0–15)

M = 3.5, median = 3 (range 0 – 12)

M = 10.2, median = 8 (range 2–48)

Employment status

20 (76.9%) working

3 (11.5%) temporarily unemployed

2 (7.7%) disabled

1 (3.8%) keeping house

State of residence

1 Arkansas

3 Colorado

2 Delaware

2 Florida

1 Georgia

1 Illinois

1 Indiana

1 Maryland

1 Mississippi

3 Missouri

2 New Jersey

2 Ohio

4 South Carolina

1 Texas

2 Washington, DC

Marital status

11 (42.3%) single, never married

8 (30.8%) married

3 (11.5%) divorced

1 (3.8%) cohabitating

1 (3.8%) widowed

1 (3.8%) prefer not to respond

1 (3.8%) other

Annual household income

8 (30.8%) less than $20,000

8 (30.8%) $20,000–$39,000

2 (7.7%) $40,000–$59, 000

2 (7.7%) $60,000–$79,000

2 (7.7%) $80,000–$94,999

1 (3.8%) $95,000 and over

2 (7.7%) prefer not to respond

1 (3.8%) missing