Table I.
Demographic, Medical, and Access Characteristics
| AYA (n = 298) | Parent (n = 200) | |
|---|---|---|
| Age | 21.35 (2.20) | 38.16 (6.94) |
| Parent report of child’s age | – | 10.12 (4.98) |
| Gender | ||
| Male | 152 (51.0%) | 73 (36.5%) |
| Female | 145 (48.7%) | 127 (63.5%) |
| Othera | 1 (0.3%) | – |
| Parent report of child’s gender | ||
| Male | – | 114 (57.0%) |
| Female | – | 86 (43.0%) |
| Race, ethnicity | ||
| African American/Black | 46 (15.4%) | 16 (8.0%) |
| Asian | 22 (7.0%) | 2 (1.0%) |
| White, Hispanic/Latino | 38 (12.8%) | 26 (13.0%) |
| White, Non-Hispanic/Latino | 192 (64.4%) | 155 (77.5%) |
| More than one race | 1 (0.3%) | 1 (0.5%) |
| Highest level of education | ||
| Finished grade school | 3 (1%) | 1 (.5%) |
| Some high school | 49 (16.4%) | 5 (2.5%) |
| Finished high school | 82 (27.5%) | 17 (8.5%) |
| Some college | 89 (29.9%) | 59 (29.0%) |
| Finished college | 25 (8.4%) | 77 (38.5%) |
| Business or technical school | 47 (15.8%) | 14 (7.0%) |
| Attended graduate school or professional school after college | 3 (1.0%) | 6 (3.0%) |
| Received a professional degree | – | 22 (11.0%) |
| Employment status | ||
| Student | 182 (61.1%) | 3 (1.5%) |
| Employed, full time | 23 (7.7%) | 128 (64.0%) |
| Employed, part time | 29 (9.7%) | 21 (10.5%) |
| On disability for work | 14 (4.7%) | 3 (1.5%) |
| Unemployed | 47 (15.8%) | 42 (21.0%) |
| Volunteer | 3 (1.0%) | 3 (1.5%) |
| SB type | ||
| Myelomeningocele | 124 (41.6%) | 113 (56.5%) |
| Meningocele | 48 (16.1%) | 23 (11.5%) |
| Lipomeningocele | 51 (17.1%) | 26 (13.0%) |
| Lipomyelomeningocele | 37 (12.4%) | 21 (10.5%) |
| Lipoma | 34 (11.4%) | 14 (7.0%) |
| Unsure | 4 (1.3%) | 3 (1.5%) |
| Shunt | 179 (60.1%) | 107 (53.5%) |
| Shunt revision | 146 (81.56%) | 62 (57.9%) |
| Number of shunt revisions | 2.27 (2.78) | 2.38 (1.91) |
| Lesion level | ||
| Sacral | 56 (18.8%) | 38 (17.5%) |
| Lumbar | 162 (54.4%) | 132 (66.0%) |
| Thoracic | 68 (22.8%) | 26 (13.0%) |
| Unsure | 12 (4.0%) | 7 (3.5%) |
| Has home broadband/WiFi | 280 (94.3%) | 191 (95.5%) |
| Access use or changes since March 2020 | ||
| Sought care via technology (generally) | 159 (53.4%) | 107 (53.5%) |
| Had video visit with physician | 89 (29.9%) | 80 (40%) |
| Had telephone visit with physician | 104 (34.9%) | 51 (25.5%) |
| Used smartphone/tablet apps to monitor physical health | 53 (17.8%) | 16 (8.0%) |
| Used smartphone/tablet apps to monitor mental health | 75 (25.2%) | 17 (8.5%) |
| Used other Technology for Behavioral Health Management | – | 4 (2.0%) |
Note. SB = spina bifida.
a
The participant who selected “Other” for their gender did not further specify with what gender identity they identify.