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Table 3 Characteristics of children living with pulmonary hypertension in the study sample (n = 139)

From: Quantifying side effects and caregiver burdens of pediatric pulmonary hypertension therapies

Child's Characteristics

n (%)

Child’s race/ethnicity

 White/Caucasian

114 (82.0%)

 Other

25 (18.0%)

Hispanic

 Yes

6 (4.3%)

 No

133 (95.7%)

Citizenship status

 U.S. Resident

119 (85.6%)

 Outside U.S

15 (10.8%)

 Prefer not to say

5 (3.6%)

Gestational age at birth

 Less than 24 weeks

6 (4.3%)

 More than 36 weeks

87 (62.6%)

 24 to 28 weeks

12 (8.6%)

 29 to 32 weeks

4 (2.9%)

 33 to 36 weeks

21 (15.1%)

 I don’t know

9 (6.5%)

Age at PH diagnosis

 First 30 days

32 (23.0%)

 1–12 months

37 (26.6%)

 1–4 years

40 (28.8%)

 5–10 years

23 (16.5%)

 11–15 years

7 (5.0%)

Current age

 < 1 year

13 (9.4%)

 1–5 years

45 (32.4%)

 6–10 years

36 (25.9%)

 11–15 years

28 (20.1%)

 16–17 years

15 (10.8%)

 >  = 18 years

2 (1.4%)

Down Syndrome

 Yes

12 (8.6%)

 No

126 (90.6%)

 Prefer not to say

1 (0.7%)

Congenital heart defect

 Yes

67 (48.2%)

 No

72 (51.8%)

Health insurance

 Yes

131 (94.2%)

 No

6 (4.3%)

 Prefer not to say

2 (1.4%)

Offered genetic testing at diagnosis

 Yes

81 (58.3%)

 No

54 (38.8%)

 I don’t know

3 (2.2%)

 Prefer not to say

1 (0.7%)

Genetic testing performed

 Yes

76 (93.8%)

 No

5 (6.2%)

Genetic counselor discussed results

 Yes

63 (82.9%)

 No

9 (11.8%)

 I don’t know

3 (3.9%)

 Prefer not to say

1 (1.3%)