Table 1.
Population characteristics
| Patient characteristic | Shunted | Unshunted | Overall |
| (n = 261) | (n = 32) | (n = 293) | |
| Male gender (%) | 129 (49%) | 18 (56%) | 147 (50%) |
| Community ambulators (%)* | 27 (10%) | 5 (16%) | 32 (11%) |
| Mortality data | |||
| Median age at death (years, IQR) | 20 (9-27) | <1 (<1-10) | 19 (5-27) |
| Infants (<1 year old) | 18 (7%) | 17 (53%) | 35 (12%) |
| Children (1-17.9 years old) | 94 (36%) | 8 (25%) | 102 (35%) |
| Adults (18 years old or older) | 149 (57%) | 7 (22%) | 156 (53%) |
| Location where death occurred (%) | |||
| Hospital with multidisciplinary MMC care | 101 (39%) | 21 (66%) | 122 (42%) |
| Home/group home | 39 (15%) | 7 (22%) | 46 (16%) |
| Hospital without multidisciplinary MMC care | 34 (13%) | 1 (3%) | 35 (12%) |
| Hospice | 11 (4%) | 0 (0%) | 11 (4%) |
| Long-term care/nursing home | 2 (1%) | 0 (0%) | 2 (1%) |
| Other (work, roadway) | 2 (1%) | 0 (0%) | 2 (1%) |
| Unknown | 72 (28%) | 3 (9%) | 75 (26%) |
| Autopsy performed (%) | 23 (9%) | 7 (22%) | 30 (10%) |
| Hydrocephalus management | |||
| Documented hydrocephalus (%) | 261 (100%) | 20 (63%) | 281 (96%) |
| Endoscopic third ventriculostomy (%) | 17 (7%) | 3 (15%) | 20 (8%) |
| Shunt revision (%) | 180 (71%) | n/a | 180 (61%) |
| Bladder management* | |||
| History of incontinent vesicostomy (%) | 46 (18%) | 1 (3%) | 47 (16%) |
| Augmented bladder | 71 (27%) | 6 (19%) | 77 (26%) |
| Skin and bone care* | |||
| Skin ulcers in the final 12 months of life (%) | 57 (23%) | 1 (3%) | 58 (20%) |
| Bone fractures in the final 12 months of life (%) | 8 (2%) | 1 (3%) | 9 (3%) |
| Baseline pulmonary function (among those who died after age one year)* | n = 243 | n = 15 | n = 258 |
| BiPap/CPap (%) | 33 (14%) | 4 (27%) | 37 (14%) |
| Supplemental oxygen (%) | 44 (18%) | 3 (20%) | 47 (18%) |
| Tracheostomy (%) | 29 (12%) | 2 (13%) | 31 (12%) |
| None (%) | 111 (46%) | 7 (47%) | 118 (46%) |
| Adult health and social characteristics* | n = 149 | n = 7 | n = 156 |
| Obesity (%) | 43 (29%) | 2 (29%) | 45 (29%) |
| Hypertension (%) | 38 (26%) | 2 (29%) | 40 (26%) |
| Chronic kidney disease (%) | 32 (21%) | 2 (29%) | 34 (22%) |
| History of depression (%) | 31 (21%) | 2 (29%) | 33 (21%) |
| History of anxiety (%) | 15 (10%) | 1 (14%) | 16 (10%) |
| History of opioid addiction (%) | 5 (3%) | 1 (14%) | 6 (4%) |
| History of alcohol addiction (%) | 2 (1%) | 1 (14%) | 3 (2%) |
| History of suicidal ideation or attempts (%) | 4 (3%) | 1 (14%) | 5 (3%) |
| Living arrangement (%) | |||
| Alone | 4 (3%) | 0 (0%) | 4 (3%) |
| With own family (i.e., with spouse/partner) | 9 (6%) | 3 (43%) | 12 (8%) |
| Parents/caregivers | 65 (44%) | 1 (14%) | 66 (42%) |
| Group home | 11 (7%) | 2 (29%) | 13 (8%) |
| Long-term care facility | 9 (6%) | 0 (0%) | 9 (6%) |
*Some data was missing (unknown). The full characteristics are available in the Online Appendix. Totals may not add up to 100% due to rounding. IQR: interquartile range; MMC: myelomeningocele.