Table 2 Characteristics of all survey respondents, including patients and parents of patients (n = 181)
Characteristic | n (%) or median (range) |
|---|---|
Parent of affected patient | 161 (89%) |
Age (years) | 39 (17–74) |
Sex, female | 159 (87.8%) |
Disease | Â |
Gaucher type 1 | 7 (3.9%) |
Gaucher type 3 | 4 (2.2%) |
Infantile-onset Pompe disease | 25 (13.8%) |
MPS 1 | 47 (26%) |
MPS 2 | 23 (12.7%) |
MPS 3 | 34 (18.8%) |
MPS 4 | 21 (11.6%) |
MPS 6 | 13 (7.2%) |
MPS 7 | 2 (1.1%) |
Other/Unknown MPS type | 5 (2.8%) |
Highest level of education | Â |
Middle school/no formal schooling | 5 (2.8%) |
High school or diploma | 28 (15.5%) |
Some college | 35 (19.3%) |
Bachelor’s degree | 35 (19.3%) |
Graduate studies | 29 (16%) |
Unknown | 49 (27.1%) |