AYAs’ and caregivers’ demographics and responses to selected items on the FKAQ
| . | AYAs, n = 20 . | Caregivers, n= 15 . |
|---|---|---|
| . | n (%) . | n (%) . |
| Demographics | ||
| Genotype | ||
| Hemoglobin SS/SB0 | 14 (70) | — |
| Hemoglobin SC/SB+ | 6 (30) | — |
| Median Age (IQR) | 16.5 (5) | — |
| Relationship status | ||
| Single | 19 (95) | 5 (33) |
| Serious relationship/marriage | 1 (5) | 10 (67) |
| Race* | ||
| Black/African American | 17 (85) | 11 (73) |
| African | 4 (20) | 2 (13) |
| White | 1 (5) | 1 (7) |
| Asian | 2 (10) | |
| Other | 1 (7) | |
| Education | ||
| Less than an associate's/ bachelor’s degree | — | 10 (67) |
| Associate's/bachelor’s or higher degree | — | 5 (33) |
| Household income | ||
| ≤$35,000 | — | 7 (47) |
| >$35,000 | — | 7 (47) |
| Not reported | — | 1 (7) |
| FKAQ knowledge items† | ||
| 1. I received information about my (my son’s) fertility (the ability to have a biological child) from my sickle cell provider. | 9 of 18 (50) | 9 of 15 (60) |
| 2. I received information about my (my son’s) fertility (the ability to have a biological child) from my parents (my family). | 7 of 18 (39) | 3 of 15 (20) |
| 3. I received information about my (my son’s) fertility (the ability to have a biological child) from the media or Internet. | 3 of 18 (17) | 2 of 14 (14) |
| 4. My (my son’s) sickle cell disease might make it difficult for me (him) to have a biological child in the future. | 4 of 19 (21) | 4 of 15 (27) |
| 5. The treatment I (my son) receive/received for my (my son's) sickle cell disease might make it difficult for me (him) to have a biological child in the future. | 2 of 19 (11) | 1 of 15 (7) |
| 6. I would like more information about how sickle cell disease and its treatment could affect my (my son’s) ability to have a biological child. | 13 of 18 (72) | 9 of 15 (60) |
| 7. I have enough knowledge about my (my son’s) fertility (ability to have a biological child). | 4 of 19 (21) | 7 of 15 (47) |
| Testing interest/barriers | ||
| 8. Do you know what semen analysis (or sperm analysis) is? | 6 of 20 (30) | 3 of 15 (20) |
| 9. Do you know how a semen (or sperm) sample is collected? | 7 of 20 (35) | 7 of 15 (47) |
| . | AYAs, n = 20 . | Caregivers, n= 15 . |
|---|---|---|
| . | n (%) . | n (%) . |
| Demographics | ||
| Genotype | ||
| Hemoglobin SS/SB0 | 14 (70) | — |
| Hemoglobin SC/SB+ | 6 (30) | — |
| Median Age (IQR) | 16.5 (5) | — |
| Relationship status | ||
| Single | 19 (95) | 5 (33) |
| Serious relationship/marriage | 1 (5) | 10 (67) |
| Race* | ||
| Black/African American | 17 (85) | 11 (73) |
| African | 4 (20) | 2 (13) |
| White | 1 (5) | 1 (7) |
| Asian | 2 (10) | |
| Other | 1 (7) | |
| Education | ||
| Less than an associate's/ bachelor’s degree | — | 10 (67) |
| Associate's/bachelor’s or higher degree | — | 5 (33) |
| Household income | ||
| ≤$35,000 | — | 7 (47) |
| >$35,000 | — | 7 (47) |
| Not reported | — | 1 (7) |
| FKAQ knowledge items† | ||
| 1. I received information about my (my son’s) fertility (the ability to have a biological child) from my sickle cell provider. | 9 of 18 (50) | 9 of 15 (60) |
| 2. I received information about my (my son’s) fertility (the ability to have a biological child) from my parents (my family). | 7 of 18 (39) | 3 of 15 (20) |
| 3. I received information about my (my son’s) fertility (the ability to have a biological child) from the media or Internet. | 3 of 18 (17) | 2 of 14 (14) |
| 4. My (my son’s) sickle cell disease might make it difficult for me (him) to have a biological child in the future. | 4 of 19 (21) | 4 of 15 (27) |
| 5. The treatment I (my son) receive/received for my (my son's) sickle cell disease might make it difficult for me (him) to have a biological child in the future. | 2 of 19 (11) | 1 of 15 (7) |
| 6. I would like more information about how sickle cell disease and its treatment could affect my (my son’s) ability to have a biological child. | 13 of 18 (72) | 9 of 15 (60) |
| 7. I have enough knowledge about my (my son’s) fertility (ability to have a biological child). | 4 of 19 (21) | 7 of 15 (47) |
| Testing interest/barriers | ||
| 8. Do you know what semen analysis (or sperm analysis) is? | 6 of 20 (30) | 3 of 15 (20) |
| 9. Do you know how a semen (or sperm) sample is collected? | 7 of 20 (35) | 7 of 15 (47) |