Table 1 Participant characteristics
Characteristic | N | % |
|---|---|---|
Child’s diagnosis |  |  |
   Spinal muscular atrophy (SMA) | 11 | 73.3 |
   Metachromatic leukodystrophy (MLD) | 4 | 26.7 |
Relationship to patient (child) | Â | Â |
   Mother | 14 | 93.3 |
   Father | 1 | 6.7 |
|  | Mean (SD) | Minimum–maximum |
|---|---|---|
Parent age | 39 (9.26) | 31–67 years old |
Child age | 6 (5.62) | 6Â months to 21Â years old |
Time to diagnosis (months) | 13.53 (14.3) | 0 (Prior to birth)- 48 |
| Â | N | % |
|---|---|---|
Region | ||
   South (Maryland, Virginia, Tennessee, Texas) | 6 | 40.0 |
   North (New York, Massachusetts) | 3 | 20.0 |
   Mid-West (Illinois, Michigan, Minnesota) | 5 | 33.3 |
   West (California) | 1 | 6.7 |
Insurance type | ||
   Employer sponsored | 15 | 100.0 |
   Medicaid | 6 | 40.0 |
   Medicare | 1 | 6.7 |
   Children’s health insurance plan | 2 | 13.3 |
   Medical assistance program (state or county) | 2 | 13.3 |
Education | ||
   High school diploma | 1 | 6.7 |
   College degree | 8 | 53.3 |
   Graduate degree | 6 | 40.0 |
Currently employed | ||
   Yes | 11 | 73.3 |
   No | 4 | 36.7 |