Symptoms and suffering experienced by children in the last month of life by parent report
| . | SCT (n = 31) . | Non-SCT (n = 110) . | Difference, percentage (95% CI) . | P . |
|---|---|---|---|---|
| Parent at least a bit prepared for symptoms/medical problems at EOL, n (%) | 16/29 (55) | 88/110 (80) | −25 (−47, −3) | .014 |
| Suffered highly from last cancer therapy, n (%) | 23/31 (74) | 54/108 (50) | 24 (4, 44) | .023 |
| Suffered highly from physical symptoms, n (%) | ||||
| Pain | 20/31 (65) | 54/108 (50) | 15 (−7, 36) | .22 |
| Anorexia | 8/30 (27) | 19/108 (18) | 9 (−10, 29) | .301 |
| Fatigue | 20/30 (66) | 48/108 (44) | 22 (1, 44) | .039 |
| Nausea/vomiting | 10/31 (32) | 18/108 (16) | 15 (−8, 35) | .078 |
| Constipation | 1/31 (3) | 21/109 (19) | −16 (−28, −4) | .046 |
| Diarrhea | 13/31 (42) | 12/107 (11) | 31 (10, 51) | < .001 |
| Breathing difficulties | 18/31 (58) | 45/106 (42) | 16 (−6, 37) | .153 |
| Seizures | 2/30 (7) | 16/109 (15) | −8 (−21, 5) | .361 |
| Fever/infection | 13/29 (44) | 32/109 (29) | 15 (−6, 38) | .124 |
| Mean no. of physical symptoms causing high suffering (SD) | 3.5 (2.0) | 2.4 (1.9) | 1.3 (−0.1, 2.7) | .009 |
| Psychologic symptoms, n (%) | ||||
| Sad some/all/most of the time | 23/30 (76) | 54/101 (53) | 23 (3, 43) | .034 |
| Anxious/nervous some/a lot/a whole lot | 19/30 (63) | 50/108 (46) | 17 (−4, 39) | .148 |
| Afraid some/all/most of the time | 19/27 (70) | 47/102 (46) | 24 (2, 46) | .031 |
| Mean no. of psychologic symptoms present at least some of the time (SD) | 2.2 (1.0) | 1.5 (1.2) | 0.7 (0, 1.4) | .007 |
| . | SCT (n = 31) . | Non-SCT (n = 110) . | Difference, percentage (95% CI) . | P . |
|---|---|---|---|---|
| Parent at least a bit prepared for symptoms/medical problems at EOL, n (%) | 16/29 (55) | 88/110 (80) | −25 (−47, −3) | .014 |
| Suffered highly from last cancer therapy, n (%) | 23/31 (74) | 54/108 (50) | 24 (4, 44) | .023 |
| Suffered highly from physical symptoms, n (%) | ||||
| Pain | 20/31 (65) | 54/108 (50) | 15 (−7, 36) | .22 |
| Anorexia | 8/30 (27) | 19/108 (18) | 9 (−10, 29) | .301 |
| Fatigue | 20/30 (66) | 48/108 (44) | 22 (1, 44) | .039 |
| Nausea/vomiting | 10/31 (32) | 18/108 (16) | 15 (−8, 35) | .078 |
| Constipation | 1/31 (3) | 21/109 (19) | −16 (−28, −4) | .046 |
| Diarrhea | 13/31 (42) | 12/107 (11) | 31 (10, 51) | < .001 |
| Breathing difficulties | 18/31 (58) | 45/106 (42) | 16 (−6, 37) | .153 |
| Seizures | 2/30 (7) | 16/109 (15) | −8 (−21, 5) | .361 |
| Fever/infection | 13/29 (44) | 32/109 (29) | 15 (−6, 38) | .124 |
| Mean no. of physical symptoms causing high suffering (SD) | 3.5 (2.0) | 2.4 (1.9) | 1.3 (−0.1, 2.7) | .009 |
| Psychologic symptoms, n (%) | ||||
| Sad some/all/most of the time | 23/30 (76) | 54/101 (53) | 23 (3, 43) | .034 |
| Anxious/nervous some/a lot/a whole lot | 19/30 (63) | 50/108 (46) | 17 (−4, 39) | .148 |
| Afraid some/all/most of the time | 19/27 (70) | 47/102 (46) | 24 (2, 46) | .031 |
| Mean no. of psychologic symptoms present at least some of the time (SD) | 2.2 (1.0) | 1.5 (1.2) | 0.7 (0, 1.4) | .007 |
Crude (unadjusted) results are presented. Denominators are based on number of respondents for each item and may differ from total sample size. Differences correspond to absolute risk differences (for proportions) or differences in means. Adjustment for time since death was performed for these outcomes, with no change in P value significance.
SCT indicates stem cell transplantation; CI, confidence interval; and EOL, end-of-life.