Table 4.
PC and OGC module data from pilot data collection
| Variable | PC module | OGC module |
| n (%) | n (%) | |
| Recruited | 115 | 180 |
| Recruited via invitation letter | 88 (76.5) | 120 (66.7) |
| Recruited via waiver of consent (deceased) | 27 (23.5) | 60 (33.3) |
| Sex | ||
| Male | 56 (48.7) | 132 (73.3) |
| Female | 59 (51.3) | 48 (26.7) |
| Age at diagnosis (years) | ||
| <50 | 6 (5.2) | 11 (6.1) |
| 50–59 | 14 (12.2) | 22 (12.2) |
| 60–69 | 30 (26.1) | 54 (30.0) |
| 70–79 | 38 (33.0) | 54 (30.0) |
| ≥80 | 22 (19.1) | 33 (18.3) |
| Missing | 5 (4.3) | 6 (3.3) |
| Resectability at diagnosis | ||
| Resectable | 25 (21.7) | 58 (32.2) |
| Borderline resectable | 3 (2.6) | 11 (6.1) |
| Unresectable | 67 (58.3) | 64 (35.6) |
| Locally advanced (LA) | 24 (20.9) | 6 (3.3) |
| Metastatic (Mets) | 43 (37.4) | 58 (32.2) |
| Not documented | 14 (12.2) | – |
| Unknown | – | 41 (22.8) |
| Missing | 6 (5.2) | 6 (3.3) |
| Clinical stage at diagnosis | ||
| I or II | 5 (4.3) | 33 (18.3) |
| III | – | 7 (3.9) |
| IV | 18 (15.7) | 50 (27.8) |
| Complete TNM* not documented | 80 (69.6) | 82 (45.6) |
| Missing | 12 (10.4) | 8 (4.4) |
| First treatment | ||
| Neoadjuvant therapy | 4 (3.5) | 60 (33.3) |
| Attempted or completed resection surgery | 27 (23.5) | 13 (7.2) |
| Curative intent ChemoTx and/or RT | – | 7 (3.9) |
| Palliative intent ChemoTx and/or RT | 37 (32.2) | 55 (30.6) |
| No treatment | 29 (25.2) | 23 (12.8) |
| Unknown | – | 16 (8.9) |
| Missing | 18 (15.7) | 6 (3.3) |
| Reasons for no surgery† | ||
| LA or Mets | 62 | 60 |
| Advanced age | 1 | 6 |
| Comorbidities | 7 | 9 |
| Patient declined | 1 | 12 |
| Patient died prior to surgery | 0 | 7 |
| Performance status | – | 4 |
| Other reason | 1 | – |
| Reason not documented | 4 | 3 |
| Participant data collection status | ||
| Complete | 51 (44.3) | 107 (59.4) |
| Incomplete | 64 (55.7) | 73 (40.6) |
| Data entry subform completeness | ||
| Demographics | 113 (98.2) | 180 (100.0) |
| Vital status and tumour recurrence | 58 (50.4) | 145 (80.6) |
| Diagnosis details | 97 (84.3) | 165 (91.7) |
| Biliary stents | 94 (81.7) | – |
| Surgery | 102 (88.7) | 168 (93.3) |
| Pathology of resection sample | 102 (88.7) | – |
| Neoadjuvant therapy | 104 (90.4) | – |
| Adjuvant therapy | 98 (85.2) | – |
| Therapy for locally advanced disease | 95 (82.6) | – |
| Therapy for metastatic disease | 77 (67.0) | – |
| Other treatment and trials | 80 (70.0) | – |
| Treatment summary | – | 167 (92.8) |
| Restaging after neoadjuvant therapy | – | 167 (92.8) |
| Chemotherapy details | – | 162 (90.0) |
| Radiotherapy details | – | 163 (90.6) |
| End-of-life details | – | 81 (45.0) |
*TNM system of classification of cancer.
†Reason for no surgery: participants may have more than one reason documented.
ChemoTX, chemotherapy; RT, radiotherapy.