Characteristics of the study samples
| Characteristic . | Adult patients (N = 174) . | Parents of pediatric patients (N = 109) . |
|---|---|---|
| All respondents | ||
| Survey duration in minutes, median | 26.2 | 28.4 |
| Age in years, mean (SD) | 34.0 (11.5) | 39.6 (9.1) |
| Female, %∗ | 72.9 | 78.5 |
| Race, %∗,† | ||
| American Indian or Alaska Native | 2.9 | 0 |
| Black or African American | 96.5 | 93.5 |
| White or Caucasian | 1.8 | 10.3 |
| Other | 4.1 | 5.6 |
| Ethnicity, % | ||
| Non-Hispanic, Latino or Spanish origin | 88.5 | 91.7 |
| Hispanic, Latino or Spanish origin | 11.5 | 8.3 |
| Educational attainment, %∗ | ||
| High school or less | 20.1 | 19.6 |
| Some college but no degree | 26.0 | 25.2 |
| Associate degree or technical school | 13.6 | 24.3 |
| 4-y college degree | 23.1 | 14.0 |
| Graduate or professional degree | 17.1 | 16.8 |
| All patients | ||
| Patient age in years, mean (SD) | 34.0 (11.5) | 8.9 (5.1) |
| Female, % | 72.9 | 46.8 |
| In the last 12 mo prior to the survey | ||
| Number of sickle cell pain crises that required attention at a hospital or a clinic, mean (SD) | 3.4 (5.4) | 1.4 (2.0) |
| Experienced some level of continued pain for at least 6 mo, % | 58.1 | 19.3 |
| Had an ACS episode, % | 19.5 | 19.3 |
| Had a stroke, %∗ | 4.1 | 0.9 |
| Received blood transfusions, % | ||
| To help manage a pain crisis | 25.9 | 19.3 |
| To resolve issues related to SCD other than pain crises (eg, damage to organs such as the brain, eyes or kidneys) | 7.5 | 9.2 |
| To prevent future strokes or heart problems | 9.8 | 7.3 |
| Currently taking hydroxyurea to treat SCD, %∗ | 49.4 | 54.3 |
| Received a bone marrow transplant in the past, %∗ | 5.3 | 2.8 |
| Received gene therapy in the past, %∗ | 1.8 | 0 |
| Characteristic . | Adult patients (N = 174) . | Parents of pediatric patients (N = 109) . |
|---|---|---|
| All respondents | ||
| Survey duration in minutes, median | 26.2 | 28.4 |
| Age in years, mean (SD) | 34.0 (11.5) | 39.6 (9.1) |
| Female, %∗ | 72.9 | 78.5 |
| Race, %∗,† | ||
| American Indian or Alaska Native | 2.9 | 0 |
| Black or African American | 96.5 | 93.5 |
| White or Caucasian | 1.8 | 10.3 |
| Other | 4.1 | 5.6 |
| Ethnicity, % | ||
| Non-Hispanic, Latino or Spanish origin | 88.5 | 91.7 |
| Hispanic, Latino or Spanish origin | 11.5 | 8.3 |
| Educational attainment, %∗ | ||
| High school or less | 20.1 | 19.6 |
| Some college but no degree | 26.0 | 25.2 |
| Associate degree or technical school | 13.6 | 24.3 |
| 4-y college degree | 23.1 | 14.0 |
| Graduate or professional degree | 17.1 | 16.8 |
| All patients | ||
| Patient age in years, mean (SD) | 34.0 (11.5) | 8.9 (5.1) |
| Female, % | 72.9 | 46.8 |
| In the last 12 mo prior to the survey | ||
| Number of sickle cell pain crises that required attention at a hospital or a clinic, mean (SD) | 3.4 (5.4) | 1.4 (2.0) |
| Experienced some level of continued pain for at least 6 mo, % | 58.1 | 19.3 |
| Had an ACS episode, % | 19.5 | 19.3 |
| Had a stroke, %∗ | 4.1 | 0.9 |
| Received blood transfusions, % | ||
| To help manage a pain crisis | 25.9 | 19.3 |
| To resolve issues related to SCD other than pain crises (eg, damage to organs such as the brain, eyes or kidneys) | 7.5 | 9.2 |
| To prevent future strokes or heart problems | 9.8 | 7.3 |
| Currently taking hydroxyurea to treat SCD, %∗ | 49.4 | 54.3 |
| Received a bone marrow transplant in the past, %∗ | 5.3 | 2.8 |
| Received gene therapy in the past, %∗ | 1.8 | 0 |