Table 1.
Demographic and Clinical Characteristics of Respondents
| Overall (n=671) | PLE (n=76) | PB (n=46) | Both (n=7) | |
|---|---|---|---|---|
| Respondent | ||||
| Parent | 637 (94.9) | 69 (90.8) | 46 (100) | 7 (100) |
|
| ||||
| Patient | 34 (5.1) | 7 (9.2) | 0 (0.0) | 0 (0.0) |
|
| ||||
| Male sex | 421 (62.7) | 45 (59.2) | 27 (58.7) | 4 (57.1) |
|
| ||||
| Age at survey (yrs), Median (IQR) | 7 (5–12) | 11 (7–17.5) | 7.5 (6–12) | 11 (7–13) |
|
| ||||
| Clinical | ||||
|
| ||||
| Heart disease etiology | ||||
| Hypoplastic left ventricle | 311 (46.3) | 47 (61.8) | 25 (54.3) | 5 (71.4) |
|
| ||||
| Hypoplastic right ventricle | 244 (36.4) | 15 (19.7) | 11 (23.9) | 1 (14.3) |
|
| ||||
| Non-specific single ventricle | 116 (17.3) | 14 (18.4) | 10 (21.7) | 1 (14.3) |
|
| ||||
| Age at Fontan (yrs), Median (IQR) | 3 (2–4) | 3 (2–4) | 3 (2–4) | 3 (2–3) |
|
| ||||
| Time since Fontan (yrs), Median (range) | 4 (2–9) | 8 (4–13) | 4.5 (3–9) | 8 (4–10) |
|
| ||||
| Other surgeries* | ||||
| Norwood | 319 (47.5) | 45 (59.2) | 26 (56.5) | 4 (57.1) |
|
| ||||
| BT shunt | 291 (43.4) | 23 (30.3) | 21 (45.7) | 1 (14.3) |
|
| ||||
| PA banding | 81 (12.1) | 11 (14.5) | 3 (6.5) | 0 (0.0) |
|
| ||||
| Hemifontan | 114 (17.0) | 20 (26.3) | 12 (26.1) | 2 (28.6) |
|
| ||||
| Glenn | 515 (76.87) | 50 (65.8) | 33 (71.7) | 5 (71.4) |
|
| ||||
| Diaphragm plication | 30 (4.5) | 9 (11.8) | 6 (13.0) | 2 (28.6) |
|
| ||||
| Other major intracardiac/great vessel procedure | 43 (6.4) | 13 (17.1) | 6 (13.0) | 2 (28.6) |
|
| ||||
| History of a chylous pleural effusion | 316 (47.1) | 50 (65.8) | 33 (71.7) | 6 (85.7) |
|
| ||||
| History of a thoracic duct ligation | 25 (3.7) | 10 (13.2) | 3 (6.5) | 0 (0.0) |
|
| ||||
| History of a pleurodesis | 25 (3.7) | 10 (13.2) | 5 (10.9) | 2 (28.6) |
All values represent N (%) unless otherwise specified; column percentages reported.
BT = Blalock-Taussig, PA = pulmonary artery
*
Categories are not mutually exclusive