Table 1.
Participant characteristics according to category of care at wave 1
| Characteristic | Category of TYA care at 12 months from diagnosis | |||
| NO-TYA-PTC n=277 |
SOME-TYA-PTC n=312 |
ALL-TYA-PTC n=193 |
||
| Age at diagnosis (years) | Mean (SD) | 21.04 (3.01) | 19.40 (3.41) | 19.97 (3.15) |
| Age groups | 13 to 15 years | 37 (10%) | 72 (17%) | 40 (15%) |
| 16 to 18 years | 34 (10%) | 128 (31%) | 78 (29%) | |
| 19 to 24 years | 288 (80%) | 215 (52%) | 152 (56%) | |
| Gender | Male | 148 (53%) | 165 (53%) | 112 (58%) |
| Female | 129 (47%) | 147 (47%) | 81 (42%) | |
| Ethnicity* | White | 252 (91%) | 273 (88%) | 163 (84%) |
| Mixed | 4 (1%) | 5 (2%) | 4 (2%) | |
| Asian | 15 (5%) | 24 (8%) | 20 (10%) | |
| Black | 4 (1%) | 7 (2%) | 2 (1%) | |
| Other | 2 (1%) | 3 (1%) | 4 (2%) | |
| Socioeconomic status (IMD quintile) | 1 – most deprived | 66 (24%) | 73 (24%) | 34 (18%) |
| 2 | 47 (17%) | 52 (17%) | 32 (17%) | |
| 3 | 51 (19%) | 60 (20%) | 37 (20%) | |
| 4 | 65 (24%) | 61 (20%) | 40 (21%) | |
| 5 – least deprived | 46 (17%) | 59 (19%) | 46 (24%) | |
| Marital Status | Married/civil partnership | 9 (4%) | 8 (3%) | 6 (3%) |
| Cohabiting | 43 (17%) | 27 (10%) | 18 (10%) | |
| Single/divorced | 198 (79%) | 227 (87%) | 148 (86%) | |
| Current status | Working full-time/part-time | 126 (45%) | 72 (23%) | 43 (22%) |
| In education | 61 (22%) | 112 (36%) | 81 (42%) | |
| Other work (apprentice/intern/voluntary) | 6 (2%) | 5 (2%) | 6 (3%) | |
| Unemployed | 10 (4%) | 11 (4%) | 7 (4%) | |
| Long-term sick | 39 (14%) | 51 (16%) | 31 (16%) | |
| Not seeking work | 35 (13%) | 61 (20%) | 25 (13%) | |
| Type of cancer (Birch classification) | Leukaemia | 19 (7%) | 49 (16%) | 33 (17%) |
| Lymphoma | 111 (40%) | 75 (24%) | 70 (36%) | |
| CNS | 9 (3%) | 9 (3%) | 12 (6%) | |
| Bone | 7 (3%) | 59 (19%) | 3 (2%) | |
| Sarcomas | 8 (3%) | 31 (10%) | 15 (8%) | |
| Germ cell | 64 (19%) | 55 (18%) | 31 (16%) | |
| Skin | 22 (8%) | 1 (<1%) | 4 (2%) | |
| Carcinomas (not skin) | 41 (15%) | 31 (10%) | 23 (12%) | |
| Miscellaneous specified† | 5 (2%) | 2 (<1%) | 1 (<1%) | |
| Unspecified malignant | 1 (<1%) | 0 | 1 (<1%) | |
| Severity at diagnosis | ||||
| (row %, column %) | Least | 200 (46% to 72%) | 133 (31% to 43%) | 95 (22% to 49%) |
| Intermediate | 49 (26% to 18%) | 82 (44% to 26%) | 56 (30% to 29%) | |
| Most | 28 (17% to 10%) | 97 (58% to 31%) | 42 (25% to 22%) | |
| Prognostic score | <50% | 21 (8%) | 60 (19%) | 41 (21%) |
| 50% to 80% | 54 (20%) | 125 (40%) | 44 (23%) | |
| >80% | 200 (73%) | 126 (41%) | 108 (56%) | |
| Location‡ | Birmingham | 41 (15%) | 59 (19%) | 12 (6%) |
| Bristol | 51 (18%) | 32 (10%) | 4 (2%) | |
| Cambridge | 12 (4%) | 8 (3%) | 1 (1%) | |
| Manchester | 22 (8%) | 35 (11%) | 11 (6%) | |
| Merseyside | 13 (5%) | 11 (4%) | 6 (3%) | |
| East Midlands | 15 (5%) | 24 (8%) | 60 (31%) | |
| Leeds | 20 (7%) | 25 (8%) | 25 (13%) | |
| Newcastle | 13 (5%) | 6 (2%) | 24 (12%) | |
| Oxford | 5 (2%) | 4 (1%) | 7 (4%) | |
| London | 60 (22%) | 83 (27%) | 10 (5%) | |
| Sheffield | 7 (3%) | 9 (3%) | 9 (5%) | |
| Southampton | 18 (7%) | 16 (5%) | 24 (12%) | |
| Given a choice about where to receive treatment§ | n=272 | n=311 | n=192 | |
| Yes | 121 (45%) | 86 (28%) | 48 (25%) | |
| No (or <19 years) | 151 (56%) | 225 (72%) | 144 (75%) | |
| Long-term condition prior to cancer | n=277 | n=311 | n=193 | |
| Yes | 20 (7%) | 34 (11%) | 18 (9%) | |
| No | 257 (93%) | 277 (89%) | 175 (91%) | |
| Time to diagnosis: days from first symptom | Median (IQR), (min, max) | n=264 | n=304 | n=188 |
| 62 (29.5 to 168.5) (0 to 1340) |
65.5 (29.5 to 152.5) (0 to 959) |
63.5 (25.5 to 151.0) (0 to 1217) |
||
| Time to diagnosis: number of GP visits before diagnosis | Median (IQR), (min, max) | n=274 | n=311 | n=193 |
| 1 (0 to 3) (0 to 20) |
1 (0 to 3) (0 to 20) |
2 (1 to 3) (0 to 40) |
||
*Wave 1 data was used with missing values completed using available Public Health England data.
†Includes 4 ‘unclassified’ – treated in cancer unit but did not have cancer
‡Those <19 years at diagnosis were assumed not to have been given a choice
§Includes the TYA-PTC and hospitals linked to the multidisciplinary team at the TYA-PTC; where available based on hospital of diagnosis, for 77 cases based on recruiting hospital
CNS, central nervous system; GP, general practitioner; IMD, index of multiple deprivation; TYA, teenagers and young adults; TYA-PTC, TYA principal treatment centres.