Table 3.
Demographics of parents and children with sickle cell disease represented in focus interviews, cognitive interviews, and cognitive debriefing
| Focus interviews N = 21 (%) |
Cognitive interviews N = 21 (%) |
Cognitive debriefing N = 24 (%) |
|
|---|---|---|---|
| Child characteristics | |||
| Gender | |||
| Female | 10 (47.6) | 7 (33.3) | 16 (66.7) |
| Age | |||
| 2–4 years | 4 (19.0) | 5 (23.8) | 5 (20.8) |
| 5–7 years | 4 (19.0) | 5 (23.8) | 5 (20.8) |
| 8–12 years | 6 (28.6) | 5 (23.8) | 6 (25.0) |
| 13–18 years | 7 (33.3) | 6 (28.6) | 8 (33.3) |
| Genotype | |||
| Hemoglobin SS | 17 (81.0) | 15 (71.4) | 16 (66.7) |
| Hemoglobin Sβ0thalassemia | 0 | 1 (4.8) | 0 |
| Hemoglobin SC | 2 (11.8) | 2 (9.5) | 7 (29.2) |
| Hemoglobin Sβ+thalassemia | 1 (4.76) | 2 (9.5) | 1 (4.2) |
| Other | 1 (4.76) | 1 (4.8) | 0 |
| Disease severity | |||
| Severe | 15 (71.4) | 14 (66.7) | 12 (50.0) |
| One or more of the following: | |||
| Frequent hospitalizations for painful episodes (≥3 in prior 3 years) |
7 (33.3) | 5 (23.8) | 6 (27.3) |
| Acute chest syndrome | 10 (47.6) | 6 (28.6) | 6 (27.3) |
| Stroke | 5 (23.8) | 3 (14.3) | 1 (4.5) |
| Silent stroke | 3 (14.3) | 2 (11.8) | 1 (4.5) |
| Mild disease | |||
| None of the above | 6 (28.6) | 7 (33.3) | 12 (50.0) |
| Other sickle cell disease complications | |||
| Splenic sequestration | 3 (14.3) | 3 (14.3) | 8 (33.3) |
| Bacteremia | 2 (9.5) | 1 (4.8) | 3 (12.5) |
| Aplastic crisis | 3 (14.3) | 4 (19.0) | 1 (4.2) |
| Osteomyelitis | 2 (9.5) | 1 (4.8) | 2 (8.3) |
| Priapism | 2 (14.3) | 1 (4.2) | |
| Avascular necrosis | 2 (14.3) | ||
| Meningitis | 1 (4.8) | 1 (4.2) | |
| Parent characteristics | |||
| Total parents | 18 (85.7) | 18 (85.7) | 21 (87.5) |
| Parent gender | |||
| Female | 18 (85.7) | 14 (77.8) | 18 (75.0) |
| Parent age, average years (standard deviation) | 34.5 (6.7) | 36.5 (8.6) | 33.4 (5.9) |