Table 2. Characteristics of children who did and did not submit narrative text or drawings.
| Children with CHDs who submitted narratives | UKCSCHD cohort survivors who did not submit narratives | |||
|---|---|---|---|---|
| N = 436 | N = 2527 | |||
| N (%) | Missing [N (%)] | N (%) | Missing [N (%)] | |
| Sex | 0 | 55 (2%) | ||
| Male | 246 (56.4%) | 1403 (55%) | ||
| Ethnic group | 4 (<1%) | Not recorded | ||
| White | 420 (96%) | |||
| Not white | 12 (2%) | |||
| Year of birth | 0 | 0 | ||
| 1992 | 31 (7.1%) | 257 (10.2%) | ||
| 1993 | 153 (35.1%) | 829 (32.8%) | ||
| 1994 | 126 (28.9%) | 809 (32.0%) | ||
| 1995 | 126 (28.9%) | 632 (25.0%) | ||
| Cardiac Prognostic Severity (CPS)† | 0 | 9(<1%) | ||
| Curative | 93 (21.3%) | 676 (26.8%) | ||
| Corrective | 248 (57.1%) | 1426 (56.4%) | ||
| Palliative | 95 (21.8%) | 416 (16.5%)* | ||
| Severity group | 0 | Not estimated§ | ||
| LS (less severe) | 313 (71.8%) | |||
| MS (more severe) | 123 (28.2%) | |||
| Primary cardiac diagnosis‡ | 0 | 0 | ||
| Hypoplastic left heart /mitral atresia | 7 (1.6%) | 42 (1.7%) | ||
| Tricuspid atresia | 7 (1.6%) | 34 (1.3%) | ||
| Double inlet ventricle | 11 (2.5%) | 42 (1.7%) | ||
| Pulmonary atresia + intact ventricular septum | 13 (3.0%) | 44 (1.7%) | ||
| Pulmonary atresia + ventricular septal defect | 19 (4.4%) | 76 (3.0%) | ||
| Truncus arteriosus | 14 (3.2%) | 39 (1.5%) | ||
| Complete atrioventricular septal defect | 18 (4.1%) | 275 (10.9%) | ||
| Transposition of the great arteries | 99 (22.7%) | 399 (15.8%) | ||
| Tetralogy of Fallot | 37 (8.5%) | 254 (10.1%) | ||
| Total anomalous pulmonary venous connection | 17 (3.9%) | 97 (3.8%) | ||
| Ventricular septal defect | 80 (18.3%) | 588 (23.3%) | ||
| Aortic stenosis | 19 (4.4%) | 66 (2.6%) | ||
| Pulmonary stenosis | 32(7.3%) | 143(5.7%) | ||
| Coarctation of the aorta | 49(11.2%) | 309(12.2%) | ||
| Miscellaneous# | 14(3.2%) | 119(4.7%) | ||
* includes 5 transplants
# includes defects found in fewer than 40 children in the cohort: congenitally corrected transposition of the great arteries (n = 24), partial atrioventricular septal defect (n = 20), aortopulmonary window (n = 26), atrial septal defect (n = 36) and rarer diagnoses.
‡ Primary cardiac diagnosis[9] was developed from a hierarchical classification adapted from Wren et al.[18]
§ not estimated for children whose parents did not complete questionnaires as recent information about current regular medication not available
† Cardiac Prognostic Severity (CPS) score adapted from Lane et al as previously described.[9] curative-children who had successful repair of atrial or ventricular septal defect, pulmonary stenosis or total anomalous pulmonary veins and had no additional cardiac defects; corrective-children who had a procedure which approximated normal anatomy and restored biventricular function, with no expectation of future surgery during childhood; palliative-children whose surgery did not restore biventricular function, including children for whom multi-stage repair was only partially achieved, only a single functional ventricle circulation was possible, who had a valve replacement which required later revision or who had a cardiac transplant.