| Symptom in high intensity†| Symptom unbearable†| ||||
---|---|---|---|---|---|---|
 | Pre-final interview % (n) | Final interview % (n) | Difference pre-final and final interview % (95% CI) ‡ | Pre-final interview % (n) | Final interview % (n) | Difference pre-final and final interview % (95% CI) ‡ |
Domain I: Medical symptoms | Â | Â | Â | Â | Â | Â |
Weakness | 36 (12) | 55(18) | −18 (−29 to 3) | 33 (11) | 64(21) | −30 (−41 to −6) |
General discomfort | 9 (3) | 27(9) | −18 (−19 to −1) | 25 (8) | 42(14) | - 16 (−33 to 9) |
Tiredness | 39 (13) | 55(18) | −15 (−29 to 7) | 42 (14) | 42(14) | 0 (−16 to 16) |
Loss of appetite | 27 (9) | 18(6) | 9 (−11 to 23) | 27 (9) | 36(12) | −9 (−26 to 13) |
Pain | 24 (8) | 21(7) | 3 (−11 to 14) | 24 (8) | 27(9) | −3 (−20 to 16) |
Not sleeping well | 12 (4) | 6(2) | 6 (−10 to 17) | 9 (3) | 24(8) | −15 (−26 to 5) |
Changed appearance | 30 (10) | 42(14) | −12 (−29 to 11) | 30 (10) | 24(8) | 6 (−12 to20) |
Shortness of breath | 6 (2) | 21(7) | −15 (−15 to 0) | 12 (4) | 21(7) | −9 (−23 to 11) |
Vomiting | 3 (1) | 12(4) | −9 (−9 to 4) | 9 (3) | 18(6) | −9 (−15 to 7) |
Impaired co-ordination | 12 (4) | 12(4) | 0 (−14 to 14) | 24 (8) | 18(6) | 6 (−16 to 25) |
Loss of concentration | 21 (7) | 9(3) | 12 (−5 to 18) | 16 (5) | 18(6) | −3 (−18 to 14) |
Memory loss | 15 (5) | 9(3) | 6 (−7 to 12) | 19 (6) | 18(6) | 0 (−11 to 11) |
Incomprehensible speech | 3 (1) | 12(4) | −9 (−15 to 7) | 9 (3) | 9(3) | 0 (−11 to 11) |
Domain II: Loss of function | Â | Â | Â | Â | Â | Â |
Impaired routine daily activities | 49 (16) | 67(22) | −18 (−35 to 7) | 55 (18) | 61(20) | −6 (−27 to 18) |
Impaired leisure activities | 49 (16) | 64(21) | −15 (−26 to 5) | 42 (14) | 52(17) | −9 (−15 to 6) |
Help needed with housekeeping | 39 (13) | 55(18) | −15 (−29 to 7) | 42 (14) | 39(13) | 3 (−16 to 10) |
Bedridden | 12 (4) | 36(12) | −24 (−30 to −5) | 18 (6) | 36(12) | −18 (−24 to 1) |
Help needed with self-care | 6 (2) | 27(9) | −21 (−27 to −1) | 15 (5) | 30(10) | −15 (−25 to 5) |
Domain III: Personal aspects | Â | Â | Â | Â | Â | Â |
Not able to do important things | 39 (13) | 31(10) | 9 (−11 to 24) | 39 (13) | 55(18) | −15 (−26 to 5) |
Feeling dependant on others | 33 (11) | 55(18) | −21 (−32 to 1) | 39 (13) | 52(17) | −11 (−23 to 8) |
Trouble accepting situation | 21 (7) | 36(12) | −15 (−26 to 5) | 27 (9) | 39(13) | −12 (−26 to 9) |
Loss of control over own life | 9 (3) | 21(7) | −12 (−23 to 7) | 16 (5) | 30(10) | −13 (−23 to 8) |
Negative thoughts or worrying | 12 (4) | 16(5) | −3 (−14 to 11) | 18 (6) | 18(6) | 0 (−17 to 17) |
Domain IV: Environment | Â | Â | Â | Â | Â | Â |
Relatives: suffering to severe | 9 (3) | 9(3) | 0** | 12 (4) | 15(5) | −3 (−9 to 7) |
Domain V: Nature and prognosis of disease | Â | Â | Â | Â | Â | Â |
Fear of future suffering | 9 (3) | 12(4) | −3 (−14 to 11) | 13 (4) | 12(4) | 0 (−11 to 11) |
Overall unbearable suffering |  |  |  | 13 (4) | 33(11) | −20 (−27 to 1) |