Table 1.
Clinical characteristics at diagnosis.
| National population1)(n=811) | Regional population1)(n=127) | |
|---|---|---|
| Age at diagnosis (years), mean (SD) | 66.2 (12.2) | 65.6 (11.7) |
| Sex, n (%) | ||
| Male | 423 (52.2%) | 64 (50.4%) |
| Female | 388 (47.8%) | 63 (49.6%) |
| Tumour site, n (%) | ||
| Small intestine | 615 (75.8%) | 102 (80.3%) |
| Pancreas | 85 (10.5%) | 18 (14.2%) |
| Other (stomach, colon, rectum) | 111 (13.7%) | 7 (5.5%) |
| Metastatic sites2) (most common), n (%) | ||
| Liver | 183 (59.6%) | 41 (78.8%) |
| Lymph nodes | 131 (42.7%) | 21 (40.4%) |
| Intestine and peritoneum | 34 (11.1%) | n<5 |
| Missing data, n | 504 | 75 |
| Stage3), n (%) | ||
| Localized disease | 15 (3.6%) | n<5 |
| Regional metastases | 150 (36.1%) | n<5 |
| Distant metastases | 251 (60.3%) | 46 (90.2%) |
| Unknown or missing data, n | 395 | 76 |
| Carcinoid syndrome4), n (%) | 293 (36.1%) | 94 (74.0%) |
| Carcinoid heart disease5), n (%) | 10 (1.2%) | n<5 |
| Time from GEP-NET diagnosis until death or 31 Dec 2013 (years), mean (SD) | 3.18 (2.22) | 2.97 (1.87) |
| Data from chart review | ||
| Functioning status6) (missing: n=4) | n/a | |
| No symptoms | 61 (49.6%) | |
| Symptoms | 62 (50.4%) | |
| Liver burden7) (missing: n=2) | n/a | |
| None | 37 (29.6%) | |
| Low | 79 (63.2%) | |
| High | 9 (7.2%) | |
| Ki 67 index (missing: n=2) | n/a | |
| Ki 67 index <3% | 90 (72.0%) | |
| Ki 67 index 3-20% | 35 (28.0%) | |
| 5-HIAA level8) (missing: n=17) | n/a | |
| Below ULN | 33 (30.0%) | |
| Above ULN | 77 (70.0%) | |
| CgA level (missing: n=2) | n/a | |
| Below ULN | 11 (8.8%) | |
| Above ULN | 114 (91.2%) |
5-HIAA: 5-hydroxyindoleacetic acid; CgA: chromogranin A; GEP-NET: gastroenteropancreatic neuroendocrine tumours; ICD-10: International Classification of Diseases 10th revision; NET: neuroendocrine tumours; SD: standard deviation; ULN: upper limit of normal.
Footnotes:
1) The Regional population is a subgroup of the National population; hence, the National population and the Regional population should not be compared.
2) Data on metastatic site was available for 307 patients in the National population and for 52 patients in the Regional population. Percentages were based on the number of non-missing observations. A patient could have more than one metastatic site registered.
3) Based on TNM-codes in the Cancer Register; Localized N=0 and M=0, Regional N=1-3 unless M=1, Distant M=1. Data on stage was available for 416 patients in the National population and for 51 patients in the Regional population. Percentages were based on the number of non-missing observations.
4) ICD-10 code E34.0 within 6 months from GEP-NET diagnosis.
5) ICD-10 codes I36 or I39.2 within 6 months from GEP-NET diagnosis.
6) Categorised based on presence of hormonal symptoms or not, according to clinical judgement (i.e. classified as a functioning tumour if the patient experienced hormonal symptoms).
7) Categorised as high if the tumour mass corresponded to >50% of the overall liver size or if the metastasis was described as "massive" or alike.
8) 24-hour value.