Table 1.
Patient and caregiver characteristics
| Total (n = 69) | Localized (n = 38) | Systemic (n = 31) | |
|---|---|---|---|
| N (%/SD) | N (%/SD) | N (%/SD) | |
| On a scale of 0–100 (0 = no impact, 100 = very large impact), how much did the child’s disease have on… | |||
| Child’s life at diagnosis (mean) | 59.2 (31.7) | 62.1 (33.5) | 55.7 (29.5) |
| Child’s life currently (mean) | 54.4 (27.8) | 52.8 (27.7) | 56.2 (28.4) |
| Family’s life overall (mean) | 70.5 (27.2) | 68.7 (29.2) | 72.7 (24.8) |
| Mean age of child at diagnosis (years) | 8.7 (3.9) | 7.9 (3.8) | 9.6 (3.6) |
| Mean age of child currently (years) | 12.6 (4.1) | 12.2 (4.4) | 13.0 (3.6) |
| Biological sex of child | |||
| Female | 55 (79.7%) | 29 (76.3%) | 26 (83.9%) |
| Male | 14 (20.3%) | 9 (23.7%) | 5 (16.1%) |
| Race/ethnicity of child | |||
| Asian, non-Hispanic | 6 (8.7%) | 5 (13.2%) | 1 (3.2%) |
| Black, Hispanic | 3 (4.3%) | 3 (7.9%) | 0 |
| Black, non-Hispanic | 6 (8.7%) | 1 (2.6%) | 5 (16.1%) |
| Native American, Hispanic | 1 (1.4%) | 1 (2.6%) | 0 |
| White, Hispanic | 14 (20.3%) | 8 (21.1%) | 6 (19.4%) |
| White, non-Hispanic | 38 (55.1%) | 20 (52.6%) | 18 (58.1%) |
| Prefer not to say | 1 (1.4%) | 0 | 1 (3.2%) |
| Primary language | |||
| English | 59 (85.5%) | 32 (84.2%) | 27 (87.1%) |
| Spanish | 5 (7.2%) | 3 (7.9%) | 2 (6.5%) |
| Other | 5 (7.2%) | 3 (7.9%) | 2 (6.5%) |
| Highest level of education in home | |||
| Completed a graduate school program | 29 (42.0%) | 16 (42.1%) | 13 (41.9%) |
| Completed College or university | 31 (44.9%) | 18 (47.4%) | 13 (41.9%) |
| Completed High School or have a GED | 5 (7.2%) | 2 (5.3%) | 3 (9.7%) |
| Completed elementary or middle school | 2 (2.9%) | 1 (2.6%) | 1 (3.2%) |
| Prefer not to say | 2 (2.9%) | 1 (2.6%) | 1 (3.2%) |
| Type of insurance | |||
| Public | 15 (21.7%) | 6 (15.8%) | 9 (29.0%) |
| Private | 52 (75.4%) | 30 (78.9%) | 22 (71.0%) |
| None | 2 (2.9%) | 2 (5.3%) | 0 |
| Annual household income | |||
| Over $150,000 | 21 (30.4%) | 14 (36.8%) | 7 (22.6%) |
| $100,000- $150,000 | 11 (15.9%) | 6 (15.8%) | 5 (16.1%) |
| $75,000- $99,999 | 7 (10.1%) | 4 (10.5%) | 3 (9.7%) |
| $50,000- $74,999 | 9 (13.0%) | 4 (10.5%) | 5 (16.1%) |
| $25,000- $49,999 | 9 (13.0%) | 5 (13.2%) | 4 (12.9%) |
| Less than $25,000 | 2 (2.9%) | 1 (2.6%) | 1 (3.2%) |
| Unknown or prefer not to say | 10 (14.5%) | 4 (10.5%) | 6 (19.4%) |
| US census regions | |||
| Northeast | 19 (27.5%) | 12 (31.6%) | 7 (22.6%) |
| Midwest | 11 (15.9%) | 6 (15.8%) | 5 (16.1%) |
| South | 19 (27.5%) | 12 (31.6%) | 7 (22.6%) |
| West | 10 (14.5%) | 5 (13.2%) | 5 (16.1%) |
| Outside of US | 10 (14.5%) | 3 (7.9%) | 7 (22.6%) |
| Time to travel to doctor | |||
| Greater than 5 h | 5 (7.2%) | 3 (7.9%) | 2 (6.5%) |
| 4- 5 h | 3 (4.3%) | 2 (5.3%) | 1 (3.2%) |
| 3- 4 h | 1 (1.4%) | 1 (2.6%) | 0 |
| 2- 3 h | 3 (4.3%) | 3 (7.9%) | 0 |
| 1- 2 h | 18 (26.1%) | 9 (23.7%) | 9 (29.0%) |
| Less than 1 h | 39 (56.5%) | 20 (52.6%) | 19 (61.3%) |