Table 2 Stakeholder ratings of the final core set of relevant PROs across the two Delphi surveys
HP (median/IQR) | Patients and parents (median/IQR) | |||||||
|---|---|---|---|---|---|---|---|---|
Total sample (n = 30) | Total sample (n = 33) | Non-acute sample (n = 13) | Acute sample (n = 20) | |||||
S1 | S2 | S1 | S2 | S1 | S2 | S1 | S2 | |
Patients’ HrQoL | 9 (1) | 9 (1) | 9 (1) | 9 (1) | 9 (1) | 9 (1) | 9 (2.5) | 9 (0.5) |
Positive affect | 7 (2) | 7 (2) | 8 (4) | 7.5 (2) | 8 (2.75) | 8.5 (2) | 8 (4) | 8 (2.5) |
Stress | 7 (2) | 8 (1) | 8 (2.75) | 8 (1) | 8 (2.75) | 8 (2) | 8 (2) | 8 (2) |
Physical activity | 7 (2.75) | 7 (1.75) | 8 (2) | 8 (1.75) | 8 (1.75) | 8 (2) | 8 (2) | 8 (1.5) |
Peer relationships | 8 (1) | 8 (1.5) | 8 (2) | 8 (1.5) | 7 (1) | 9 (1.75) | 9 (1) | 8 (1.5) |
Social participation | –a | 8 (1) | –a | 8 (1) | –a | 9 (0.75) | –a | 8 (3) |
Cognitive functioning (behavioural) | 8 (2) | 8 (2) | 8 (2) | 8.5 (2) | 8.5 (2) | 9 (1) | 8 (2) | 9 (1) |
Self-efficacy (towards the disease) | 8 (1) | 8 (1) | 9 (2) | 8 (1) | 9 (2.75) | 8 (1.75) | 8.5 (1.75) | 9 (1) |
Patients' disease- and treatment knowledge | 8 (2) | 9 (1) | 9 (1) | 9 (1) | 9 (1) | 9 (2) | 9 (1.75) | 9 (0) |
Patients’ attitude towards disease and treatment | 8 (2) | 9 (1) | 8.5 (2) | 9 (1) | 8 (1) | 9 (2) | 9 (2.75) | 9 (1) |
Treatment- and diet adversities for patients | 8 (2) | 8 (1) | 9 (1) | 8 (2) | 9 (1) | 9 (3.75) | 8.5 (2.75) | 9 (1) |
Patients' compliance with diet and treatment | 8 (2) | 9 (1) | 8.5 (2) | 9 (1) | 8.5 (1.75) | 8 (2) | 8.5 (2) | 9 (1) |
Parental HrQoL | 7 (3) | 8 (2) | 8.5 (3) | 8 (2) | 7 (3.75) | 9 (1) | 9 (1.75) | 7 (3.5) |
Social support of the family | 8 (2.75) | 8 (1) | 7 (4) | 8 (1) | 6 (2) | 8 (2) | 8 (3.5) | 7 (2.5) |
Parental disease- and treatment knowledge | 9 (1) | 9 (1) | 9 (1) | 9 (1) | 8.5 (1.75) | 9 (0) | 9 (0.75) | 9 (1) |
Parental attitude towards disease and treatment | 9 (1) | 9 (0) | 9 (1) | 9 (0) | 9 (2) | 6.5 (0.75) | 9 (1) | 7 (0) |
Parental stress | 8 (2) | 8 (2) | 7.5 (3.75) | 8 (2) | 6.5 (2.75) | 8 (2.75) | 8 (7) | 8 (2) |