Table 3 Outcome data scores for total sample and comparison of symptoms and palliative care needs across disease phases
|  | Score | Newly diagnosed (n = 102) | Stable (n = 268) | Progressive, relapsed stage (n = 184) | Test | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Measure | n | Mean, SD | Median (range) | n | Mean, SD | Median (range) | n | Mean, SD | Median (range) | n | Mean, SD | Median (range) | F value | p |
 Time since diagnosis (months) | 552 | 42.3 (40.7) | 29.9 (0.1–283) | 102 | 10.4 (16.8) | 4.6 (0.2–103.1) | 267 | 44.2 (39.8) | 30.4 (0.49–239.9) | 183 | 57.3 (41.8) | 57.3 (41.8) | 52.2 | 0.001* |
 ECOG Performance status | 551 | – | 1 (0–4) | 101 | – | 1 (0–3) | 268 | – | 1 (0–4) | 182 | – | 1 (0–4) | X 2: 24.4 | 0.002 |
MyPOSa | ||||||||||||||
 Total score | 468 | 21.5 (13.5) | 19 (0–61) | 86 | 22.9 (13.4) | 20 (1–61) | 229 | 18.9 (13.1) | 17 (1–59) | 150 | 24.7 (13.4) | 23 (0–61) | 9.6 | 0.001 |
 Symptoms and function | 526 | 76.2 (16.6) | 78.8 (30.4–100) | 96 | 75.8 (14.5) | 76.8 (36–100) | 253 | 79.1 (14.3) | 80.4 (30.4–100) | 175 | 72.2 (14.8) | 71.4 (34–100) | 11.9 | 0.001 |
 Emotion and coping | 499 | 80 (16.6) | 84.4 (18.8–100) | 94 | 77.1 (17.2) | 81.3 (34–100) | 244 | 82.4 (16.2) | 87.5 (18.8–100) | 158 | 77.9 (16.4) | 81.3 (34–100) | 5.3 | 0.005 |
 Healthcare support and information needs | 544 | 90.8 (12.7) | 95 (40–100) | 99 | 91.2 (12.8) | 95 (40–100) | 264 | 91.1 (12.9) | 100 (40–100) | 178 | 89.8 (12.5) | 95 (50–100) | 0.6 | 0.532 |
EORTC-QLQ-C30b | ||||||||||||||
 Global health status | 555 | 61.2 (22.3) | 66.7 (0–100) | 102 | 59.5 (20.5) | 66.7 (0–100) | 267 | 65.8 (21.8) | 66.7 (0–100) | 183 | 55.2 (22.7) | 50 (0–100) | 12.9 | 0.001 |
 Physical function | 554 | 61.5 (22.5) | 60 (0–100) | 101 | 61.2 (26.7) | 66.7 (0–100) | 266 | 65.3 (25.2) | 66.7 (0–100) | 184 | 56.2 (24.6) | 53.3 (0–100) | 6.9 | 0.001 |
 Role function | 553 | 59 (33.1) | 66.7 (0–100) | 101 | 55.4 (35.6) | 66.7 (0–100) | 266 | 64.9 (30.9) | 66.7 (0–100) | 183 | 52.3 (33.5) | 50 (0–100) | 8.9 | 0.001 |
 Emotional function | 555 | 76.2 (22.1) | 83.3 (0–100) | 102 | 74.5 (23.7) | 83.3 (0–100) | 267 | 77.3 (21.3) | 83.3 (0–100) | 183 | 75.3 (22.3) | 75 (0–100) | 0.8 | 0.459 |
 Cognitive function | 555 | 79 (21.9) | 83.3 (0–100) | 102 | 78.1 (21.9) | 83.3 (0–100) | 267 | 81.2 (20.5) | 83.3 (16.7–100) | 183 | 76.3 (23.7) | 83.3 (0–100) | 2.8 | 0.060 |
 Social function | 554 | 65.1 (31.5) | 66.7 (0–100) | 102 | 60.5 (34.8) | 66.7 (0–100) | 267 | 70.2 (29.3) | 66.7 (0–100) | 182 | 60.1 (31.7) | 66.7 (0–100) | 7.1 | 0.001 |
EORTC QLQ-MY20c | ||||||||||||||
 Disease symptoms | 549 | 73.9 (21.2) | 77.8 (0–100) | 101 | 75.7 (20.9) | 77.8 (0–100) | 262 | 74 (20.9) | 77.8 (5.6–100) | 183 | 72.7 (21.8) | 77.8 (0–100) | 0.6 | 0.530 |
 Side-effects of treatment | 542 | 81.4 (14.4) | 83.3 (0–100) | 100 | 80.3 (14) | 83.3 (43–100) | 261 | 83.5 (14) | 86.7 (30–100) | 178 | 78.8 (14.9) | 80 (23–100) | 6.1 | 0.002 |
 Body image | 551 | 77.9 (30.5) | 100 (0–100) | 100 | 79 (31.7) | 100 (0–100) | 265 | 79.6 (28.2) | 100 (0–100) | 183 | 74.9 (32.8) | 100 (0–100) | 1.4 | 0.247 |
 Future perspective | 549 | 64.6 (26.5) | 66.7 (0–100) | 100 | 61.4 (28.1) | 66.7 (0–100) | 264 | 67.2 (25.1) | 77.8 (0–100) | 182 | 62.1 (27.3) | 66.7 (0–100) | 2.8 | 0.061 |
EuroQOL-5D-3L | ||||||||||||||
 EQ5D Index score | 550 | 0.65 (0.28) | 0.69 (−0.5–1) | 101 | 0.66 (0.28) | 0.69 (−0.18–1) | 264 | 0.67 (0.27) | 0.69 (−0.18–1) | 182 | 0.59 (0.29) | 0.69 (−0.35–1) | 4.5 | 0.012 |
 EQ5D Visual analogue scale VAS | 318 | 63.51 (20.02) | 61 (0.5–100) | 68 | 58.8 (19.8) | 60 (0.5–96) | 139 | 69 (19.6) | 69.5 (11–100) | 111 | 59.5 (19.1) | 60 (10–100) | 9.82 | 0.001 |