Table 2.
Demographic characteristics of caregivers of patients with ASMD included in the study.
| Characteristic | Caregivers of pediatric/adolescent patients | Caregivers of adult patients |
|---|---|---|
| (N = 12) | (N = 3) | |
| Age (years) | ||
| Mean (SD) | 38.4 (4.0) | 57.7 (9.5) |
| Range | 33.0–45.0 | 47.0–65.0 |
| Gender, n | ||
| Male | 1 | 1 |
| Female | 9 | 2 |
| Missing | 2 | 0 |
| Race/ethnicity of patient or caregiver, n (%) | ||
| White | 8 | 3 |
| Asian | 1 | 0 |
| Mixed—White and Asian | 1 | 0 |
| Not collected | 0 | 0 |
| Missing | 2 | 0 |
| Type of ASMD of patient, n | ||
| Type B | 9 | 2 |
| Type A/B | 1 | 1 |
| Missing | 2 | 0 |
| Caregiver assessment of patient’s ASMD severity (n, %) | ||
| Mild | 3 | 1 |
| Moderate | 4 | 2 |
| Severe | 2 | 0 |
| Very severe | 0 | 0 |
| Missing | 3 | 0 |
ASMD acid sphingomyelinase deficiency, SD standard deviation.