Introduction
Methods
Patient selection
Data collection
Congenital heart disease of great complexity
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Conduits, valved or nonvalved Cyanotic congenital heart (all forms) Double-outlet ventricle Eisenmenger syndrome Fontan procedure Mitral atresia Single ventricle (also called double inlet or outlet, common or primitive) Pulmonary atresia (all forms) Pulmonary vascular obstructive diseases Transposition of the great arteries Tricuspid atresia Tricuspid atresia Other abnormalities of atrioventricular or ventriculoarterial connection not included above (i. e. crisscross heart, isomerism, heterotaxy syndromes, ventricular inversion) |
Congenital heart disease of moderate complexity
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Aorta-left ventricular fistulae Anomalous pulmonary venous drainage, partial or total Atrioventricular canal defects (partial or complete) Coarctation of the aorta Ebstein’s anomaly Infundibular right ventricular outflow obstruction of significance Ostium primum atrial septal defect Patent ductus arteriosus (not closed) Pulmonary valve regurgitation (moderate to severe) Pulmonic valve stenosis (moderate to severe) Sinus of Valsalva fistula/aneurysm Sinus venosus atrial septal defect Subvalvar or supravalvar aortic stenosis (except HOCM) Tetralogy of Fallot
Ventricular septal defect with
Absent valve or valves Aortic regurgitation Coarctation of the aorta Mitral disease Right ventricular outflow tract obstruction Straddling tricuspid/mitral valve Subaortic stenosis |
Simple congenital heart disease
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Native disease
Isolated congenital aortic valve disease Isolated congenital mitral valve disease (e. g., except parachute valve, cleft leaflet) Isolated foramen ovale or small atrial septal defect Isolated small ventricular septal defect (no associated lesions) Mild pulmonic stenosis
Repaired conditions
Previously ligated or occluded ductus arteriosus Repaired secundum or sinus venosus atrial septal defect without residua Repaired ventricular septal defect without residua |
Results
Demographic data
Total
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n = 193 | |
Sex
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Male | 105 | (54 %) |
Female | 88 | (46 %) |
Age at first visit adult cardiology department
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Mean | 20.12 | (SD 1.90) |
≤17 | 2 | (1 %) |
18–21 | 156 | (81 %) |
≥22 | 35 | (18 %) |
Travel distance
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Mean | 42.31 | (SD 36.41) |
≤20 km | 61 | (32 %) |
21–50 km | 67 | (35 %) |
51–100 km | 54 | (28 %) |
>100 km | 11 | (6 %) |
Referral routes
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PCAH | 157 | (81 %) |
PCAE | 6 | (3 %) |
CARH | 5 | (3 %) |
CARE | 9 | (5 %) |
SNCH | 5 | (3 %) |
SNCE | 3 | (2 %) |
GP | 8 | (4 %) |
No-shows
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At least once | 34 | (18 %) |
Repeatedly | 16 | (8 %) |
Daily activities
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School | 114 | (59 %) |
Work | 46 | (24 %) |
Neither | 33 | (17 %) |
Cardiological diagnosis distribution
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Severe | 43 | (22 %) |
Moderate | 102 | (53 %) |
Mild | 48 | (25 %) |
NYHA class distribution
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I | 177 | (92 %) |
II | 12 | (6 %) |
III | 4 | (2 %) |
IV | 0 | (0 %) |
Underlying syndromes in patients
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Down | 19 | (63 %a) |
DiGeorge | 4 | (13 %a) |
Noonan | 2 | (7 %a) |
4p-deletion | 2 | (7 %a) |
Turner | 1 | (3 %a) |
Williams | 1 | (3 %a) |
Fabry | 1 | (3 %a) |
Total | 30 | (16 %b) |