Table 3.
Methods used for the identification and invitation of participants and details of who provided consent for participation.
| All studies, n (%) | Evaluating an intervention (n = 71, 33%) | Assessing quality of life (n = 22, 10%) | Observing course of illness (n = 36, 17%) | Exploring views or perspectives (n = 60, 28%) | Evaluating current practice (n = 26, 12%) | |
|---|---|---|---|---|---|---|
| Identification of participants – method | ||||||
| Medical records | 25 (12) | 5 (7) | 2 (9) | 5 (14) | 9 (15) | 4 (15) |
| Clinic attendance | 20 (9) | 2 (3) | 2 (9) | 3 (8) | 10 (17) | 3 (12) |
| Database/registry | 19 (9) | 3 (4) | 4 (18) | 2 (6) | 5 (8) | 5 (19) |
| Participation in previous research | 7 (3) | – | 1 (5) | 3 (8) | 2 (3) | 1 (4) |
| Other | 7 (3) | 2 (2) | 1 (5) | – | 3 (5) | 1 (4) |
| Not reported | 137 (64) | 59 (83) | 12 (55) | 23 (64) | 31 (52) | 12 (46) |
| Identification of participants – person | ||||||
| Physician | 26 (12) | – | 3 (14) | 3 (8) | 17 (28) | 3 (12) |
| Researcher | 10 (5) | 1 (1) | 1 (5) | 1 (3) | 1 (2) | 6 (23) |
| Nurse | 5 (2) | – | 1 (5) | – | 3 (5) | 1 (4) |
| Other | 11 (5) | 2 (2) | 3 (14) | – | 5 (8) | 1 (4) |
| Not reported | 163 (76) | 68 (96) | 14 (64) | 32 (89) | 34 (57) | 15(58) |
| Invitation of participants – method | ||||||
| Letter | 37 (17) | – | 8 (36) | – | 20 (33) | 9 (35) |
| In person | 22 (10) | 2 (3) | 2 (9) | 2 (6) | 11 (18) | 5 (19) |
| 1 (1) | – | – | – | 1 (2) | – | |
| Telephone | 2 (1) | – | – | – | 2 (4) | – |
| Other | 7 (4) | – | 1 (5) | 1 (3) | 3 (5) | 2 (8) |
| Not reported | 146 (68) | 69 (97) | 11 (50) | 33 (92) | 23 (38) | 10 (39) |
| Invitation of participants – person | ||||||
| Researcher | 20 (9) | 3 (4) | 1 (5) | 1 (3) | 10 (17) | 5 (19) |
| Physician | 10 (5) | – | – | – | 7 (12) | 3 (12) |
| Nurse | 8 (4) | – | 1 (5) | – | 6 (10) | 1 (4) |
| Other | 12 (6) | 2 (2) | 2 (9) | 1 (3) | 5 (8) | 2 (8) |
| Not reported | 165 (77) | 66 (93) | 18 (82) | 34 (94) | 32 (53) | 15 (58) |
| Consenting of participants | ||||||
| Parents only | 109 (50) | 34 (48) | 10 (46) | 18 (50) | 37 (62) | 10 (39) |
| CYP only | 4 (2) | 1 (1) | 1 (5) | – | 2 (3) | – |
| Parents and CYP | 52 (24) | 14 (20) | 2 (9) | 11 (31) | 5 (8) | 7 (27) |
| Parents and siblings | 2 (1) | – | 1 (5) | – | 1 (2) | 1 (4) |
| Siblings | 2 (1) | – | – | – | 1 (2) | 1 (4) |
| Parents, siblings and CYP | 1 (1) | – | – | – | 1 (2) | – |
| Not reported | 48 (22) | 19 (27) | 6 (27) | 6 (17) | 10 (17) | 7 (27) |
CYP: children and young people.