TABLE 1 |.
Participant demographics.
| Characteristic | Site 1 (Total n = 22) | Site 2 (Total n = 24) | Total Sample (n = 46) |
|---|---|---|---|
|
| |||
| Survivor participants | n = 6 | n = 7 | n = 13 |
| Age at time of interview; mean (SD), range | 18.33 (2.58), 15–22 years | 14.83 (2.01) 12–17 years | 16.45 (2.84) 12–22 years |
| Child’s age at diagnosis; mean (SD), range | 13.17 (4.58), 5–17 years | 11.05 (3.37) 6–15 years | 12.03 (3.95) 5–17 years |
| Disease group, n (%) | |||
| Blood cancer | 2 (33) | 2 (28.5) | 4 (31) |
| CNS tumor | 2 (33) | 2 (28.5) | 4 (31) |
| Solid tumor | 2 (33) | 3 (43) | 5 (38) |
| Gender,+ n (%) | |||
| Boy/Man | 2 (33) | 4 (57) | 6 (46) |
| Girl/Woman | 3 (50) | 3 (43) | 6 (46) |
| Transgender man | 1 (17) | 0 | 1 (8) |
| Genderqueer | 1 (17) | 0 | 1 (8) |
| Race, n (%) | |||
| African American/Black | 2 (33) | 0 | 2 (15) |
| White | 4 (67) | 3 (43) | 7 (54) |
| Prefer to self-describea | 0 | 1 (14) | 1 (8) |
| Prefer not to answer or unsure how to answera | 0 | 3 (43) | 3 (23) |
| Ethnicity, n (%) | |||
| Hispanic or Latino | 0 | 4 (57) | 4 (31) |
| Parent/Caregiver participants | n = 16 | n = 17 | n = 33 |
|
| |||
| Age; mean (SD), range | 41.06 (8.23), 27–59 | 39.12 (5.77), 30–50 | 40.06 (7.02), 27–59 |
| Child’s disease group, n (%) | |||
| Blood cancer | 5 (31) | 6 (35) | 11 (33) |
| CNS tumor | 6 (38) | 6 (35) | 12 (36) |
| Solid tumor | 5 (31) | 5 (29) | 10 (30) |
| Gender, n (%) | |||
| Man | 0 | 3 (18) | 3 (9) |
| Woman | 16 (100) | 14 (82) | 30 (91) |
| Race, n (%) | |||
| African American/Black | 1 (6) | 0 | 1 (3) |
| Asian | 0 | 1 (6) | 1 (3) |
| Native American or Alaska Native | 0 | 1 (6) | 1 (3) |
| White | 14 (88) | 12 (70) | 26 (79) |
| Prefer to self-describea | 1 (6) | 2 (12) | 3 (9) |
| Prefer not to answer or unsure how to answera | 0 | 1 (6) | 1 (3) |
| Ethnicity, n (%) | |||
| Hispanic or Latino | 0 | 3 (18) | 3 (9) |
| Employment status, n (%) | |||
| Full-time employee | 6 (38) | 6 (35) | 12 (36) |
| Part-time employee | 1 (6) | 0 (0) | 1 (3) |
| Stays at home full-time with child(ren) | 5 (31) | 3 (18) | 8 (24) |
| Medical leave | 0 | 1 (6) | 1 (3) |
| Unemployed | 0 | 5 (29) | 5 (15) |
| Retired | 1 (6) | 0 | 1 (3) |
| Other | 2 (13) | 2 (12) | 4 (12) |
| Missing | 1 (6) | 0 | 1 (3) |
| Education level, n (%) | |||
| Graduated high school or GED | 3 (15) | 5 (29) | 8 (24) |
| Some college | 2 (10) | 1 (6) | 3 (9) |
| Associate’s degree | 3 (15) | 0 | 3 (9) |
| Bachelor’s degree | 5 (25) | 5 (29) | 10 (30) |
| Graduate or professional degree | 3 (15) | 6 (35) | 9 (27) |
a
Self-descriptions of race included Middle Eastern, Hispanic, and Mixed race; some survivor participants reporting Hispanic Ethnicity reported they were unsure how to describe their race. Other employment status includes self-employed.
+
Gender and race is >100% because participants could select all options that apply. For survivors who were not interviewed, gender was extracted from the electronic health record, and parents reported the child’s race.