Table 1:
Demographics and Self-Reported Disease Assessment Among Study Participant.
| Overall (N=104) % | |
|---|---|
| Sickle cell disease patient sex (N = 66) | |
| Male | 32 (48.5%) |
| Female | 34 (51.5%) |
| Parent/Caregiver sex (N = 38) | |
| Male | 6 (15.8%) |
| Female | 32 (84.2%) |
| Race | |
| Black or African American | 100 (96.2%) |
| White (not Hispanic or Latino) | 0 |
| Hispanic or Latino | 4 (3.8%) |
| Age of parent/ caregiver respondents (N = 38) | |
| Median (IQR) | 36 (30, 39) |
| Age of Sickle Cell Disease Patient respondents (N = 66) | |
| Median (IQR) | 23 (18, 29) |
| Type of Sickle cell disease | |
| Hb SS | 64 (61.5%) |
| Hb SC | 25 (24%) |
| Hb Sβ0 thalassemia | 6 (5.8%) |
| Hb Sβ+ thalassemia | 6 (5.8%) |
| Other | 2 (1.9%) |
| Don’t know | 1 (1%) |
| Health Literacy score (The Newest Vital Sign) 1 | |
| Mean (SD) | 2.3 (1.7) |
| Median (IQR) | 2 (1, 3) |
| Other than you/your child, does anybody else in your family have sickle cell disease | |
| Yes | 39 (37.5%) |
| No | 65 (62.5%) |
| How would you describe you/your child’s overall health? | |
| Poor | 5 (4.8%) |
| Fair | 23 (22.1%) |
| Good | 47 (45.2%) |
| Very good | 20 (19.2%) |
| Excellent | 9 (8.7%) |
| How you think you/your child’s disease has changed over time? | |
| Worsened | 22 (21.2%) |
| Stabilized | 64 (61.5%) |
| Improved | 18 (17.3%) |
| My/my child’s treatment is controlling my disease satisfactorily | |
| Strongly Disagree | 3 (2.9%) |
| Disagree | 7 (6.7%) |
| Neither agree nor disagree | 22 (21.2%) |
| Agree | 55 (52.9%) |
| Strongly agree | 17 (16.4%) |
| Have you/your child been offered the following treatments before? 1 | |
| Blood transfusions | 57 (54.8%) |
| Hydroxyurea | 69 (66.3%) |
| Bone marrow transplant | 19 (18.3%) |
| Gene therapy | 6 (5.8%) |
| None of the above | 20 (19.2%) |
| Do you / your child 1 : | |
| Currently take Hydroxyurea | 64 (61.5%) |
| Taken Hydroxyurea in the past | 14 (13.5%) |
| Currently receive chronic blood transfusions | 13 (12.5%) |
| Has received chronic blood transfusions in the past | 11 (10.6%) |
| None of the above | 26 (25%) |
| Do you know anyone with sickle cell disease who has had a bone marrow transplant? | |
| Yes | 20 (19.2%) |
| No | 84 (80.8%) |
| Which of the following treatments can cure sickle cell disease? 2 | |
| Blood transfusions | 20 (19.2%) |
| Hydroxyurea | 31 (29.8%) |
| Bone marrow transplant | 62 (59.6%) |
| Gene therapy | 23 (22.1%) |
| There is no cure for sickle cell disease | 11 (10.6%) |
1
A score of less than for indicates the possibility of limited literacy on The Newest Vital Sign.
2
Does not sum to 104, participants could select multiple choices.