Table 1.

Self-reported demographics of respondents and their child with Down syndrome (DS).

Age of respondent (n=528)
Median age (range)	41 (17–74)
Age of person with DS (n=532)
Median age (range)	5 (<1–44)
Time to primary care (n=531)
1–15 minutes	282 (53.11%)
15–30 minutes	193 (36.35%)
30–60 minutes	47 (8.85%)
Over 60 minutes	9 (1.69%)
How affected by DS (n=530)
Minimally	149 (28.11%)
Moderately	290 (54.72%)
Very	91 (17.17%)
Timing of diagnosis (n=532)
Pre-natal	209 (39.28%)
Post-natal	323 (60.72%)
Frequency of clinical care (n=531)
Daily	27 (5.09%)
Weekly	214 (40.30%)
1–3 times per week	81 (15.25%)
Every few months	162 (30.51%)
Less than once a year	47 (8.85%)