Table 2.
Sociodemographic and clinical characteristics of patients in both phase I and III, as well as the characteristics of their proxies
| Phase I | Phase III | ||||||
|---|---|---|---|---|---|---|---|
| Primary brain tumours | Metastatic brain tumours | All | Primary brain tumours | Metastatic brain tumours | All | ||
| Dyads (participants) | N | 23 (45) | 21 (42) | 44 (87) | 45 (90) | 40 (80) | 85 (170) |
| Region of residence | N (%) | ||||||
| Northern European region | 8 (35%) | 8 (38%) | 16 (36%) | 19 (42%) | 14 (35%) | 33 (39%) | |
| Southern European region | 7 (30%) | 9 (43%) | 16 (36%) | 5 (11%) | 5 (13%) | 10 (12%) | |
| English-speaking region | 8 (35%) | 4 (19%) | 12 (27%) | 9 (20%) | 9 (23%) | 18 (22%) | |
| Non-European region | 12 (27%) | 12 (30%) | 24 (28%) | ||||
| Sex (male) | N (%) | ||||||
| Patient | 14 (61%) | 8 (38%) | 22 (50%) | 20 (44%) | 12 (30%) | 32 (38%) | |
| Proxy | 10 (45%) | 12 (57%) | 22 (51%) | 19 (42%) | 18 (45%) | 37 (44%) | |
| Age (yrs) | M (SD) | ||||||
| Patient | 55.39 (12.7) | 60.75 (12.1) | 57.95 (12.6) | 54.68 (12.3) | 61.48 (11.4) | 57.88 (12.3) | |
| Proxy | 50.26 (14.7) | 58.20 (13.2) | 54.04 (14.4) | 56.62 (10.5) | 59.90 (12.9) | 58.16 (11.7) | |
|
Level of education [1–8]* (Low [1–4]) |
N (%) | ||||||
| Patient | 16 (70%) | 12 (57%) | 28 (64%) | 24 (53%) | 25 (63%) | 49 (58%) | |
| Proxy | 16 (73%) | 14 (67%) | 30 (70%) | 23 (51%) | 23 (58%) | 45 (53%) | |
| Patients | |||||||
| Dominant hand (Right) | N (%) | 37 (82%) | 35 (88%) | 72 (85%) | |||
| KPS | Median (range) | 90 (60–100) | 90 (40–100) | 90 (40–100) | |||
| Histology | N (%) | ||||||
| LGG | 1 (4%) | 1 (4%) | 19 (22%) | 19 (22%) | |||
| HGG | 22 (96%) | 22 (96%) | 26 (31%) | 26 (31%) | |||
| BrM 1–3 | 17 (81%) | 17 (81%) | 23 (27%) | 23 (27%) | |||
| BrM > 3 | 4 (19%) | 4 (19%) | 17 (20%) | 17 (20%) | |||
|
Current active N (%) treatment |
11 (24%) | 18 (45%) | 29 (34%) | ||||
| Chemotherapy | 8 (18%) | 4 (10%) | 12 (14%) | ||||
| Radiotherapy | 3 (7%) | 9 (23%) | 12 (14%) | ||||
| -Stereotactic | 2 (5%) | 2 (5%) | |||||
| -Whole brain | 4 (10%) | 4 (10%) | |||||
| -Unspecified | 3 (8%) | 3 (8%) | |||||
| Other | 0 (0%) | 5 (13%) | 5 (6%) | ||||
| Previous treatment N (%) | |||||||
| Resection | 37 (82%) | 12 (30%) | 49 (58%) | ||||
| Re-resection | 7 (16%) | 2 (5%) | 9 (11%) | ||||
| Chemotherapy | 26 (58%) | 4 (10%) | 30 (35%) | ||||
| Radiotherapy | 32 (71%) | 29 (73%) | 61 (72%) | ||||
| -Stereotactic | 20 (50%) | 20 (50%) | |||||
| -Whole brain | 7 (18%) | 7 (18%) | |||||
| -Unspecified | 1 (3%) | 1 (3%) | |||||
| Other | 4 (9%) | 1 (3%) | 5 (6%) | ||||
| Brain tumour hemisphere | N (%) | ||||||
| Left hemisphere | 15 (33%) | 13 (33%) | 28 (33%) | ||||
| Right hemisphere | 27 (60%) | 10 (25%) | 37 (44%) | ||||
| Midline | 2 (4%) | 0 (0%) | 2 (2%) | ||||
| Diffuse | 1 (2%) | 17 (43%) | 18 (21%) | ||||
| Brain tumour location | N (%) | ||||||
| Frontal | 16 (36%) | 10 (25%) | 26 (31%) | ||||
| Temporal | 11 (25%) | 1 (3%) | 12 (14%) | ||||
| Occipital | 3 (7%) | 3 (8%) | 6 (7%) | ||||
| Parietal | 7 (16%) | 1 (3%) | 8 (9%) | ||||
| Intraventricular | 1 (2%) | 1 (3%) | 2 (2%) | ||||
| Multiple | 6 (14%) | 24 (60%) | 30 (35%) | ||||
|
Molecular biomarkers 1p/19q-codeletion |
N (%) | ||||||
| 1p/19q-codeletion | 6 (13%) | 6 (13%) | |||||
| 1p/19q non-codeletion | 8 (18%) | 8 (18%) | |||||
| Unknown | 31 (69%) | 31 (69%) | |||||
| IDH-mutation | |||||||
| IDH-mutant | 8 (18%) | 8 (18%) | |||||
| IDH-wildtype | 12 (27%) | 12 (27%) | |||||
| Unknown | 25 (56%) | 25 (56%) | |||||
| Relation (Partner) | N (%) | 17 (77%) | 16 (76%) | 33 (77%) | 33 (73%) | 28 (70%) | 61 (72%) |
| Contact intensity | N (%) | ||||||
| Living together | 18 (82%) | 17 (81%) | 35 (81%) | 38 (84%) | 28 (70%) | 66 (78%) | |
| Few times a week | 2 (9%) | 1 (5%) | 3 (7%) | 6 (13%) | 9 (23%) | 15 (18%) | |
| Weekly | 2 (9%) | 3 (14%) | 5 (12%) | 1 (2%) | 3 (8%) | 4 (5%) | |
| Duration relationship (yrs) | M (SD) | 28.55 (13.7) | 32.58 (15.7) | 30.46 (14.6) | 31.38 (12.8) | 34.83 (15.1) | 33.00 (13.9) |
*Level of education according to international standard classification of education ranging from 0 (low) to 8 (high) [20]
yrs years, KPS Karnofsky Performance Score, LGG low-grade glioma, HGG high-grade glioma, BrM brain metastases, N number, M mean, SD standard deviation