Table 1.
Characteristics of adolescent and young adult (AYA) kidney transplant recipients and parents
| AYA all ages (n=32) | AYA aged 18–24 (n=13) | AYA aged 12–17 (n=19) | Parents of AYA aged 12–17 (n=15) | |
|---|---|---|---|---|
| Number of focus groups | 9 | 5 | 4 | 4 |
| SOCIODEMOGRAPHIC CHARACTERISTICS | ||||
| Age, M (SD), range | 17.6 (3.6), 13.0–24.8 | 21.3 (2.2), 18.4–24.8 | 15.1 (1.7), 13.0–17.7 | 43.9 (8.8), 31.0–65.0 |
| Age of recipient at transplant, M (SD), range | 12.7 (4.8), 1.7–13.0 | 15.8 (3.8), 10.0–23.0 | 10.7 (4.3), 1.7–16.3 | 10.5 (4.4), 1.7–16.3 |
| Sex, female, % (n) | 43.8 (14) | 38.5 (5) | 47.4 (9) | 93.3 (14) |
| Race/ethnicity, % (n) | ||||
| NonHispanic White/European | 81.3 (26) | 84.6 (11) | 78.9 (15) | 73.3 (11) |
| Black/African | 3.1 (1) | 7.7 (1) | 0.0 (0) | 0.0 (0) |
| Hispanic/White | 3.1 (1) | 0.0 (0) | 5.3 (1) | 0.0 (0) |
| Asian or Native Hawaiian/Pacific Islander | 3.1 (1) | 0.0 (0) | 5.3 (1) | 6.7 (1) |
| Mixed | 9.4 (3) | 7.7 (1) | 10.5 (2) | 13.3 (2) |
| Missing | 0.0 (0) | 0.0 (0) | 0.0 (0) | 6.7 (1) |
| Level of education, % (n) | ||||
| 9th grade or lower | 40.6 (13) | 0.0 (0) | 68.4 (13) | 6.7 (1) |
| 10th to 12th grade | 37.5 (12) | 46.1 (6) | 31.6 (6) | 6.7 (1) |
| > high school | 21.9 (7) | 53.8 (7) | 0.0 (0) | 53.3 (8) |
| Missing | 0.0 (0) | 0.0 (0) | 0.0 (0) | 33.3 (5) |
| Parent’s relationship to recipient, % (n) | --- | --- | --- | |
| Mother/stepmother | 86.7 (13) | |||
| Father/stepfather | 13.3 (2) | |||
| TRANSPLANT-RELATED CHARACTERISTICS | ||||
| Years since patient’s most recent transplant, Median (IQR) | 3.6 (1.7–8.0) | 4.6 (1.7–8.5) | 3.6 (2.1–5.4) | 3.8 (1.1–5.4) |
| Lifetime number of kidney transplants received, % (n) | ||||
| 1 | 84.4 (27) | 76.9 (10) | 89.5 (17) | 93.3 (14) |
| 2 | 15.6 (5) | 23.1 (3) | 10.5 (2) | 6.7 (1) |
| Indication for transplant, % (n) | ||||
| Congenital anomalies of the kidney and urinary tract | 34.4 (11) | 23.1 (3) | 42.1 (8) | 33.3 (5) |
| Nephronophthisis | 18.8 (6) | 15.4 (2) | 21.0 (4) | 26.7 (4) |
| Acquired disorders (focal segmental glomerulosclerosis, glomerulonephritis) | 15.6 (5) | 30.8 (4) | 5.3 (1) | 6.7 (1) |
| Other | 18.7 (6) | 23.1 (3) | 15.8 (3) | 33.3 (5) |
| Unknown | 12.5 (4) | 7.7 (1) | 15.8 (3) | 0.0 (0) |
| Type of most recent transplant, living donor, % (n) | 65.6 (21) | 53.8 (7) | 73.7 (14) | 80.0 (12) |
| Study participant parent was a donor for child, % (n) | --- | --- | --- | 46.7 (7) |
| Required dialysis before transplant, % (n) | 56.3 (18) | 53.8 (7) | 57.9 (11) | 53.3 (8) |