Patient flow from identification to analyses for all 10 jurisdictions
| Jurisdiction | Wales | England | Scotland | Northern Ireland | Denmark | Manitoba | Norway | Sweden | Ontario | Victoria | Total |
| Start date | 04/10/2013 | 01/11/2013 | 01/12/2013 | 06/08/2013 | 28/10/2013 | 01/05/2013 | 01/09/2014 | 01/02/2014 | 30/04/2014 | 01/07/2013 | |
| n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | |
| Eligible patients*† | 1274 (100) | 1314 (100) | 1852 (92.4) | 568 (45.0) | 490 (79.9) | 1288 (84.6) | 1860 (95.5) | 537 (85.8) | 5585 (71.8)‡ | 1170 (58.7) | 14664 (76.9) |
| Packs sent to PCP§ | 1274 (100) | 1198 (91.2) | 1070 (57.8) | 3542 (79.8) | |||||||
| Pack not forwarded by PCP | 211 (16.6) | 87 (7.3) | 103 (9.6) | 401 (11.3) | |||||||
| Unsure if pack forwarded by PCP | 333 (26.1) | 362 (30.2) | 209 (19.5) | 904 (25.5) | |||||||
| Pack forwarded by PCP | 730 (57.3) | 749 (62.5) | 758 (70.8) | 2237 (63.2) | |||||||
| Patients contacted by PCP§¶ | 1063 (83.4) | 1111 (92.7) | 967 (90.4) | 3141 (88.7) | |||||||
| Patients approached directly§ | 555 (97.7) | 490 (100) | 761 (59.1) | 1860 (100) | 537 (100) | 5099 (91.3) | 1049 (89.7) | 10351 (70.6) | |||
| Patient died | 49 (3.2) | 139 (1.8) | 188 (1.8) | ||||||||
| Other | 13 (1.0) | 26 (1.7) | 368 (4.7) | 407 (3.9) | |||||||
| No address | 11 (0.7) | 309 (4.0) | 320 (3.1) | ||||||||
| Patient responses (% of eligible patients)§ | 314 (24.6) | 285 (21.7) | 337 (18.2) | 283 (49.8) | 340 (69.4) | 274 (21.3) | 358 (19.2) | 319 (59.4) | 899 (16.1) | 472 (40.3) | 3881 (26.5) |
| Patient responses (% of contacted)** | 314 (29.5) | 285 (25.7) | 337 (34.9) | 283 (52.2) | 340 (69.4) | 274 (40.6) | 358 (19.2) | 319 (59.4) | 899 (21.0) | 472 (45.0) | 3881 (30.9) |
| Did not fulfil eligibility criteria | 7 (2.2) | 1 (0.4) | 1 (0.4) | 1 (0.4) | 10 (0.3) | ||||||
| Received after submission | 20 (7.1) | 55 (11.7) | 75 (2.1) | ||||||||
| Other | 7 (2.2) | 57 (16.9) | 6 (2.1) | 16 (4.7) | 11 (4.0) | 45 (5.0) | 127 (26.9) | 269 (7.6) | |||
| Patient surveys forwarded for analyses†† | 300 (95.5) | 284 (99.6) | 280 (83.1) | 256 (90.5) | 324 (95.3) | 262 (95.6) | 358 (100) | 319 (100) | 854 (95.0) | 290 (61.4) | 3527 (90.9) |
| Excluded for analyses—total | 17 (5.7) | 10 (3.5) | 7 (2.5) | 3 (1.2) | 7 (2.2) | 4 (1.5) | 72 (20.1) | 8 (2.5) | 532 (62.3) | 1 (0.3) | 661 (18.7) |
| Not sampled | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 494 (57.8) | 0 (0) | 494 (14) |
| Previous cancer | 0 (0) | 3 (1.1) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 1 (0.1) | 0 (0) | 4 (0.1) |
| Unknown date of consent | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 3 (0.8) | 6 (1.9) | 0 (0) | 0 (0) | 9 (0.3) |
| Unknown date of diagnosis | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 1 (0.4) | 6 (1.7) | 0 (0) | 0 (0) | 0 (0) | 7 (0.2) |
| Consent too late/too early | 17 (5.7) | 7 (2.5) | 7 (2.5) | 3 (1.2) | 0 (0) | 3 (1.1) | 60 (16.8) | 1 (0.3) | 37 (4.3) | 1 (0.3) | 136 (3.9) |
| Other | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 7 (2.2) | 0 (0) | 3 (0.8) | 1 (0.3) | 0 (0) | 0 (0) | 11 (0.3) |
| Patient surveys analysed (% of forwarded surveys) | 283 (94.3) | 274 (96.5) | 273 (97.5) | 253 (98.8) | 317 (97.8) | 258 (98.5) | 286 (79.9) | 311 (97.5) | 322 (89.4) | 289 (99.7) | 2866 (94.5)‡‡ |
| PCP surveys analysed (% of analysed patients) | 234 (82.7) | 225 (82.1) | 224 (82.1) | 213 (84.2) | 241 (76.0) | 148 (57.4) | 169 (59.1) | n/a | 121 (37.7) | 199 (68.9) | 1774 (69.5)§§ |
| Specialist surveys analysed (% of analysed patients) | 164 (58.0) | 156 (56.9) | 179 (65.6) | n/a¶¶ | 187¶¶ (59) | n/a*** | 64 (22.4) | n/a*** | 89 (27.7) | 99 (34.3) | 938 (45.9)†† † |
*Eligible according to protocol: that is, woman, 40 years or more, alive, consented to participate within 9 months of diagnosis, diagnosed with breast cancer (ICD-10: C50.0-C50.9), behaviour code ICD-O-3=3 and without prior history of cancer of the breast or synchronous primary breast cancer.
†In some jurisdictions, some ‘eligible’ patients had preopted out of being contacted and in a small number PCP information was not available.
‡initially, 1458 additional cases were eligible but excluded for this study as urban sample size was reached.
§Percentages of eligible patients.
¶Maximum of potentially contacted patients, that is, sum of packs forwarded by PCP and packs unsure if forwarded by PCP.
**Percentages of patients contacted by PCP (see note ¶) for Wales, England and Scotland or percentages of patients contacted directly by a registry excl. non-accessible patients (all other jurisdictions).
††Percentages of patient responses.
‡‡Denominator=total number of forwarded cases excl. patients not included in analytic sample in Ontario.
§§Denominator=total number of analysed cases excl. patients from Sweden.
¶¶Data obtained from registries instead: Northern Ireland from the Northern Ireland Cancer Registry, supported by extracts from clinical datasets; Denmark from the Danish Colorectal Cancer Group.
***Data not collected in this jurisdiction.
†††Denominator=total number of analysed cases excl. patients from Sweden, Manitoba and Northern Ireland.
ICD, International Classification of Diseases; PCP, primary care physician.