Table 1.
Roles of survey respondents and workshop participants
| Role, n (%) | Initial survey (n=524) |
Child/antenatal prioritisation survey (n=250) |
Adult prioritisation survey (n=252) |
Workshop (n=39)* |
| Patients with CHD | 133 (25.4) | 36 (14.4) | 151 (59.9) | 9 (23) |
| <16 years | 24 (4.5) | 18 (7.2) | 0 | 0 |
| ≥16 years | 109 (20.8) | 18 (7.2) | 151 (59.9) | 9 (23) |
| Parents | 247 (47.1) | 105 (42.0) | 28 (11.1) | 8 (21) |
| Mothers | 227 (43.3) | 95 (38.0) | 25 (9.9) | 7 (18) |
| Fathers | 20 (3.8) | 10 (4.0) | 3 (1.2) | 1 (3) |
| Other family members | 7 (1.3) | 5 (2.0) | 3 (1.2) | 0 |
| Charities† | 0 | 3 (1.2) | 2 (0.8) | 1 (3) |
| Healthcare professionals | 135 (25.8) | 101 (40.4) | 68 (27.0) | 21 (54) |
| Paediatric/fetal cardiologists | 21 (4.0) | 29 (11.6) | 5 (2.0) | 3 (8) |
| Adult congenital cardiologists | 18 (3.4) | 1 (0.4) | 27 (10.7) | 5 (13) |
| Congenital cardiac surgeons | 21 (4.0) | 10 (4.0) | 9 (3.6) | 6 (15) |
| Paediatricians/neonatologists with expertise in cardiology | 5 (1.0) | 7 (2.8) | 0 | 0 |
| Cardiac anaesthetists | 7 (1.3) | 5 (2.0) | 1 (0.4) | 0 |
| Paediatric/adult Intensivists | 11 (2.1) | 17 (6.8) | 2 (0.8) | 0 |
| Paediatric nurses | 18 (3.4) | 14 (5.6) | 1 (0.4) | 3 (8) |
| Adult congenital nurses | 7 (1.3) | 0 | 8 (3.2) | 1 (3) |
| Clinical perfusionists | 5 (1.0) | 6 (2.4) | 4 (1.6) | 1 (3) |
| Other | 22 (4.4)‡ | 12 (4.8)§ | 7 (2.8)¶ | 2 (5)** |
| Unknown | 2 (0.4) | – | – | – |
*Eleven confirmed participants were unable to attend: 4 parents, 2 patients, 1 adult congenital nurse, 1 clinical psychologist, 1 neonatologist with expertise in cardiology, 1 paediatric intensivist, 1 physiotherapist.
†Some charities responded or attended in a personal capacity as parents or patients.
‡Twenty-two respondents: 4 CHD researchers, 4 physiotherapists, 3 cardiac physiologists, 2 clinical psychologists, 2 echocardiographers, 1 adult cardiac surgeon, 1 adult cardiologist, 1 cardiac pharmacist, 1 general practitioner, 1 paediatric dentist, 1 paediatric dietician, 1 radiologist.
§Twelve respondents: 3 paediatric dieticians, 2 cardiac physiologists, 2 echocardiographers, 1 clinical scientist, 1 general practitioner, 1 obstetrician, 1 paediatric pharmacist, 1 surgical care practitioner.
¶Seven respondents: 4 adult cardiologists, 2 physiotherapists, 1 cardiac physiologist, 1 clinical psychologist, 1 echocardiographer, 1 general practitioner, 1 pulmonary hypertension pulmonologist.
**Two participants: 1 clinical psychologist, 1 non-ACHD cardiologist.
ACHD, adult congenital heart disease.