Table 3:
Number of questions from online survey (phase 1) and number presented to the steering committee, by category
| Category | Questions from survey | Questions removed | No. (%) of questions presented to steering committee | |||||||
|---|---|---|---|---|---|---|---|---|---|---|
| No. (%)suggested by patients | No. (%) suggested by nonpatients | Overall total | ||||||||
| Clinicians | Clinician-scientists | Researchers | Total | Out of scope | Already answered by research | Duplicate | ||||
| Awareness | 4 (3.5) | 0 | 0 | 0 | 0 (0) | 4 (2.3) | 1 | 0 | 0 | 3 (2.3) |
| Diagnosis | 9 (7.9) | 4 | 0 | 0 | 4 (7) | 13 (7.4) | 0 | 0 | 4 | 9 (7.0) |
| Family planning | 7 (6.1) | 1 | 0 | 0 | 1 (2) | 8 (4.6) | 1 | 2 | 0 | 5 (3.9) |
| Follow-up | 9 (7.9) | 1 | 1 | 0 | 2 (3) | 11 (6.3) | 0 | 0 | 0 | 11 (8.5) |
| Genetics and molecular | 31 (27.2) | 3 | 4 | 7 | 14 (23) | 45 (25.7) | 6 | 3 | 8 | 28 (21.7) |
| Global health | 0 (0.0) | 2 | 0 | 1 | 3 (5) | 3 (1.7) | 0 | 0 | 0 | 3 (2.3) |
| Psychosocial | 15 (13.2) | 11 | 0 | 1 | 12 (20) | 27 (15.4) | 0 | 0 | 3 | 24 (18.6) |
| Second cancer | 22 (19.3) | 6 | 1 | 0 | 7 (11) | 29 (16.6) | 0 | 1 | 9 | 19 (14.7) |
| Treatment | 6 (5.3) | 14 | 1 | 0 | 15 (25) | 21 (12.0) | 3 | 0 | 4 | 14 (10.8) |
| Trilateral retinoblastoma | 2 (1.8) | 1 | 0 | 0 | 1 (2) | 3 (1.7) | 0 | 1 | 0 | 2 (1.6) |
| Vision | 7 (6.1) | 0 | 0 | 0 | 0 (0) | 7 (4.0) | 0 | 0 | 0 | 7 (5.4) |
| Miscellaneous | 2 (1.8) | 2 | 0 | 0 | 2 (3) | 4 (2.3) | 0 | 0 | 0 | 4 (3.1) |
| Total | 114 (65.1) | 45 | 7 | 9 | 61 (35) | 175 (100.0) | 11 | 7 | 28 | 129 (100.0) |