Table 2 Diagnostic odyssey in 22q11DS
From: Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome
N (%) | |
|---|---|
How long did it take to obtain a diagnosis? (in years) | |
Range | 0–12 |
M(SD) | 1.9(2.8) |
How many physicians did you consult before receiving diagnosis? | |
Range | 1–17 |
M(SD) | 3.9(3.9) |
Source of information on 22q11DS | |
Internet | 41(93.2) |
medical specialist | 15(34.1) |
family doctor | 7(15.9) |
local support group | 20(45.4) |
genetic clinic | 12(27.3) |
scientific publications | 13(29.5) |
association/foundation for people with 22q11DS | 24(54.5) |
other (Facebook, friends with 22q11DS children) | 5(11.4) |