Table 1.
Survey II Respondent and Dependent Demographic and Medical Characteristics (n = 391).
| Respondentsa | n (%) or mean (SD, range) |
|---|---|
| Caregiver sex, n (%) | |
| Male | 35 (9.0) |
| Female | 356 (91.0) |
| Country of residence, n (%) | |
| United States | 285 (72.9) |
| Other | 106 (27.1) |
| Dependent characteristics | |
| Age at survey, yb, n (%) | |
| ≤5 | 117 (29.9) |
| 6-17 | 240 (61.4) |
| ≥18 | 34 (8.7) |
| Child sex, n (%) | |
| Male | 231 (59.1) |
| Female | 160 (40.9) |
| Reported genetic status, n (%) | |
| CNV | 138 (35.3) |
| Monogenic condition | 253 (64.7) |
| Reported seizuresc, n (%) | |
| Yes | 103 (34.8) |
| Reported autism spectrum disorderd, n (%) | |
| Yes | 118 (40.4) |
| Vineland composite score,e mean (SD), range | 62.0 (17.2), 20-108 |
| Vineland adaptive functioning, n (%) | |
| Severely to profoundly impaired | 27 (10.8) |
| Mildly to moderately impaired | 194 (77.2) |
| Average to above average | 30 (12.0) |
| Comorbidity details, mean | |
| Body system scoref,g | 5.5 |
| Current medications (range 0-14)h | 2.9 |
a The mean age of respondents was 42.0 (SD 7.6).
b The mean age of the dependents (children) was 10.1 (SD 6.5)
c For this variable, n = 296
d For this variable, n = 292
e For this variable, n = 251
f For this variable, n = 295, SD of 2.2
g Systems considered for the score include allergy, immunology, orthopedic, cancer, dermatologic, endocrinologic, gastrointestinal, genital, cardiac, infectious diseases, renal, neurologic, pulmonary, seizures, and ophthalmologic.
h For this variable, n = 262.