Table 2.
Journey from first help-seeking to diagnosis described in early-onset colorectal cancer patients’ personal narratives published online in Australia, New Zealand and United Kingdom
| Categories | Australia (n = 116) | NZ (n = 21) | UK (n = 136) | Total (n = 273) | ||||
|---|---|---|---|---|---|---|---|---|
| n | % | n | % | n | % | N | % | |
| Symptoms (multiple possible) | ||||||||
| Abdominal pain | 56 | 48.3 | 13 | 61.9 | 66 | 48.5 | 135 | 49.5 |
| Stool change | 34 | 29.3 | 7 | 33.3 | 45 | 33.1 | 86 | 31.5 |
| Fatigue | 30 | 25.9 | 8 | 38.1 | 42 | 30.9 | 80 | 29.3 |
| Rectal bleeding | 29 | 25.0 | 3 | 14.3 | 49 | 36.0 | 81 | 29.7 |
| Bowel habit change | 27 | 23.3 | 9 | 42.9 | 44 | 32.4 | 80 | 29.3 |
| Bloating | 21 | 18.1 | 3 | 14.3 | 22 | 16.2 | 46 | 16.9 |
| Nausea or vomiting | 13 | 11.2 | 6 | 28.6 | 15 | 11.0 | 34 | 12.5 |
| Weight change | 10 | 8.6 | 3 | 14.3 | 21 | 15.4 | 34 | 12.5 |
| Other | 27 | 23.3 | 5 | 23.8 | 8 | 5.9 | 40 | 14.7 |
| None | 5 | 4.3 | 0 | 0.0 | 3 | 2.2 | 8 | 2.9 |
| Initial diagnosis (Multiple possible) | ||||||||
| Anaemia or iron deficiency | 14 | 12.1 | 0 | 0.0 | 7 | 5.2 | 21 | 7.7 |
| Appendicitis, coeliac dis. or diverticulitis | 12 | 10.3 | 1 | 4.8 | 4 | 2.9 | 17 | 6.2 |
| Irritable Bowel Syndrome | 10 | 8.6 | 2 | 9.5 | 35 | 25.7 | 47 | 17.2 |
| Haemorrhoids | 9 | 7.8 | 1 | 4.8 | 15 | 11.0 | 25 | 9.2 |
| Inflammatory Bowel Disease | 8 | 6.9 | 1 | 4.8 | 11 | 8.1 | 20 | 7.3 |
| Gynaecological | 6 | 5.2 | 3 | 14.3 | 10 | 7.4 | 19 | 7.0 |
| Diet related changes | 5 | 4.3 | 2 | 9.5 | 5 | 3.7 | 12 | 4.4 |
| Viral infection | 5 | 4.3 | 4 | 19.1 | 5 | 3.7 | 14 | 5.1 |
| Other | 18 | 15.5 | 2 | 9.5 | 8 | 5.9 | 28 | 10.3 |
| Diagnostic test (Multiple possible) | ||||||||
| Colonoscopy | 82 | 70.7 | 14 | 66.7 | 96 | 70.6 | 192 | 70.3 |
| CT scan | 56 | 48.3 | 4 | 19.1 | 63 | 46.3 | 123 | 45.1 |
| MRI | 18 | 15.5 | 1 | 4.8 | 27 | 19.9 | 46 | 16.9 |
| PET | 13 | 11.2 | 0 | 0.0 | 6 | 4.4 | 19 | 7.0 |
| Ultrasound | 11 | 9.5 | 2 | 9.5 | 11 | 8.1 | 24 | 8.8 |
| Other | 10 | 8.6 | 2 | 9.5 | 9 | 6.6 | 21 | 7.7 |
| X-Ray | 5 | 4.3 | 0 | 0.0 | 1 | 0.7 | 6 | 2.2 |
| Sigmoidoscopy | 4 | 3.5 | 0 | 0.0 | 16 | 11.8 | 20 | 7.3 |
| Faecal | 1 | 0.9 | 2 | 9.5 | 1 | 0.7 | 4 | 1.5 |
| Time from initial symptoms to first consult | ||||||||
| Less than three months | 43 | 37.1 | 7 | 33.3 | 43 | 31.6 | 93 | 34.1 |
| 3 to 12 months | 29 | 25.0 | 2 | 9.5 | 25 | 18.4 | 56 | 20.5 |
| More than 12 months | 8 | 6.9 | 2 | 9.5 | 8 | 5.9 | 18 | 6.6 |
| Not specifically reported | 36 | 31.0 | 10 | 47.6 | 60 | 44.1 | 106 | 38.8 |
| Type of first consult | ||||||||
| Primary care - Routine | 76 | 65.5 | 15 | 71.4 | 109 | 80.2 | 200 | 73.3 |
| Emergency Department | 10 | 8.6 | 0 | 0.0 | 9 | 6.6 | 19 | 7.0 |
| Primary care – Emergency | 8 | 6.9 | 3 | 14.3 | 5 | 3.7 | 16 | 5.9 |
| Not reported | 22 | 19.0 | 3 | 14.3 | 13 | 9.6 | 38 | 13.9 |
| Self-efficacy | ||||||||
| Requested colonoscopy | 10 | 8.6 | 0 | 0.0 | 3 | 2.2 | 13 | 4.8 |
| Requested specific CRC investigation | 4 | 3.5 | 2 | 9.5 | 5 | 3.7 | 11 | 4.0 |
| Requested ultrasound | 1 | 0.9 | 1 | 4.8 | 0 | 0.0 | 2 | 0.7 |
| Requested other tests | 3 | 2.6 | 0 | 0.0 | 1 | 0.7 | 4 | 1.5 |
| Not reported | 98 | 84.5 | 18 | 85.7 | 127 | 93.4 | 243 | 89.0 |
| Time from first consult to diagnosis | ||||||||
| Less than three months | 36 | 31.0 | 2 | 9.5 | 19 | 14.0 | 57 | 20.9 |
| 3 to 12 months | 15 | 12.9 | 2 | 9.5 | 51 | 37.5 | 68 | 24.9 |
| More than 12 months | 11 | 9.5 | 4 | 19.1 | 26 | 19.1 | 41 | 15.0 |
| Not reported | 54 | 46.6 | 13 | 61.9 | 40 | 29.4 | 107 | 39.2 |
| Referrals | ||||||||
| Only 1 | 44 | 37.9 | 2 | 9.5 | 25 | 18.4 | 71 | 26.0 |
| Between 2 and 4 | 14 | 12.1 | 2 | 9.5 | 9 | 6.6 | 25 | 9.2 |
| More than 5 | 9 | 7.8 | 4 | 19.1 | 4 | 2.9 | 17 | 6.2 |
| Not reported | 49 | 42.2 | 13 | 61.9 | 98 | 72.1 | 160 | 58.6 |
| Number of outpatient visits to diagnosis | ||||||||
| Only 1 | 5 | 4.3 | 1 | 4.8 | 3 | 2.2 | 9 | 3.3 |
| Between 2 and 4 | 21 | 18.1 | 1 | 4.8 | 25 | 18.4 | 47 | 17.2 |
| More than 5 | 5 | 4.3 | 4 | 19.1 | 30 | 22.6 | 39 | 14.3 |
| Not reported | 85 | 73.3 | 15 | 71.4 | 78 | 57.4 | 178 | 65.2 |
| Number of inpatient visits to diagnosis | ||||||||
| Only 1 | 8 | 6.9 | 3 | 14.3 | 10 | 7.4 | 21 | 7.7 |
| Between 2 and 4 | 3 | 2.6 | 0 | 0.0 | 13 | 9.6 | 16 | 5.9 |
| More than 5 | 0 | 0.0 | 1 | 4.8 | 2 | 1.5 | 3 | 1.1 |
| Not reported | 105 | 90.5 | 17 | 81.0 | 111 | 81.6 | 233 | 85.4 |
| Reason for delay in diagnosis | ||||||||
| Interval to consult with specialist/test | 2 | 1.7 | 1 | 4.8 | 9 | 6.6 | 12 | 4.4 |
| Missed diagnosis opportunity | 20 | 17.2 | 8 | 38.1 | 38 | 27.9 | 66 | 24.2 |
| Not reported | 94 | 81.0 | 12 | 57.1 | 89 | 65.4 | 195 | 71.4 |