Table 2.
Characteristics of Study Participants
| Characteristic | Phase 1 n (%) (n = 8) |
Phase 2 n (%) (n = 128) |
Phase 3 n (%) (n = 40) |
Phase 4 n (%) (n = 6) |
|---|---|---|---|---|
| Women | 4 (50) | 65 (51) | 21 (52) | 3 (50) |
| Men | 4(50) | 63 (49) | 19 (48) | 3(50) |
| Age group: 16–20 y | 28 (22) | 9 (23) | ||
| 21–25 y | 4 (50) | 33 (27) | 10 (25) | 2 (33) |
| 26–30 y | 2 (25) | 33 (25) | 10 (25) | 2 (33) |
| 31–35 y | 1 (12) | 23 (17) | 6 (14) | 2 (33) |
| 36–39 y | 1 (12) | 11 (9) | 5 (13) | |
| Diagnosis | ||||
| Craniopharyngioma | 1 (12) | 20 (16) | 5 (13) | 1(16) |
| IDH wildtype diffuse astrocytoma | 2 (2) | 1 (16) | ||
| Neurocytoma | 2 (2) | |||
| Germ cell tumor and Germinoma | 1 (12) | 19 (15) | 8 (20) | |
| Low grade glioma | 1 (12) | 37 (29) | 11 (8) | |
| Medulloblastoma | 2 (25) | 28 (22) | 8 (20) | 1 (16) |
| Oligodendrocytoma | 2 (2) | |||
| Rhabdoid tumor | 1 (1) | 1 (2) | ||
| Xanthroastrocytoma | 1 (1) | |||
| Meningioma | 2 (2) | 1(2) | 1 (16) | |
| Ependymoma | 7 (5) | 4 (10) | ||
| Pineal tumour | 1 (12) | 4 (4) | 1 (2) | 1 (16) |
| Choroid plexus tumour | 2 (25) | 1 (1) | 1 (2) | 1 (16) |
| Gliosarcoma | 1 (1) | |||
| Glioblastoma | 1 (1) | |||
| Ethnicitya: | Not recorded | |||
| African | 1 (1) | |||
| White British | 7 (88) | 98 (78) | 35 (88) | |
| Asian | 1 (12) | 13 (10) | 5 (12) | |
| Chinese | 1 (1) | |||
| Missing data | 12 (10) | |||
| Employment statusa: employed | 3 (37) | 79 (63) | 28 (70) | Not recorded |
| Marriage statusa: married | 2 (25) | 16 (13) | 6 (15) | Not recorded |
Note:
aInformation on ethnicity, employment, and marriage status was recorded with informed consent, this information was not recorded where participants declined to participate. Demographic information on nonresponders is in Supplementary Material 4.