Table 1. Roles of participants in the surveys and workshop.
| Role | Initial survey stage 1 (n = 128) |
Ranking survey stage 2 (n = 65) |
Workshop stage 3 (n = 39) |
|---|---|---|---|
| Adult patients | 7 | 2 | 4 |
| Patient family members | 42 | 23 | 5 |
| Parents | 38 | 20 | 5 |
| Partners | 3 | 3 | 0 |
| Child | 1 | 0 | 0 |
| Healthcare professionals | 71 | 34 | 23 |
| Paediatric Cardiologists | 13 | 6 | 5 |
| Adult Congenital Cardiologist | 9 | 7 | 4 |
| Cardiac Surgeons | 13 | 7 | 7 |
| Cardiac Anaesthetists/Intensivists | 9 | 4 | 1 |
| Paediatric Nurses | 15 | 5 | 3 |
| Adult Congenital Nurses | 3 | 2 | 2 |
| Other * | 8 | 3 | 1 |
| Researchers | 7 | 5 | 4 |
| Charity representatives | 1 | 1 | 3 |
| Policy makers | 0 | 0 | 0 |
*
Stage 1: 2 Cardiac Physiologists, 2 Cardiac Radiologists, 1 Clinical Perfusionist, 1 Data Analyst, 1 Paediatrician with Expertise in Cardiology, 1 Surgical Care Practitioner. Stage 2: 1 Cardiac Radiologist, 1 Data Analyst, 1 Paediatrician with Expertise in Cardiology. Stage 3: 1 Clinical Geneticist.