Table 1.
Demographics, injury characteristics and baseline characteristics according to age at insult.
| Early insult (EI) a n = 33 | Late insult (LI) b n = 43 | Total n = 76 | |
|---|---|---|---|
| Demographic variables | |||
| Age at assessment, median (IQR), yrs. | 11 (10, 13) | 15 (13, 16) | 13 (11, 15) *** |
| Sex, girls, n (%) | 17 (52) | 26 (60) | 43 (57) |
| Intact family unit, n (%) c | 22 (67) | 28 (65) | 50 (66) |
| Maternal educational level, n (%) d | |||
| Primary or high school | 12 (36) | 15 (35) | 27 (36) |
| University/ college | 19 (58) | 27 (63) | 46 (61) |
| Insult characteristics | |||
| Age at insult, median (IQR), yrs. | 5 (4, 6) | 10 (8, 13) | 8 (5.5, 10.5)*** |
| Time post-insult, median (IQR), yrs. | 6 (5, 8) | 3 (1, 5) | 5 (3, 7) *** |
| Primary injury, n (%) | |||
| Brain tumor | 12 (36) | 17 (40) | 29 (38) |
| Traumatic brain injury | 5 (15) | 13 (30) | 18 (24) |
| Other | 16 (48) | 13 (30) | 29 (38) |
| Stroke | 11 (33) | 6 (14) | 17 (22) |
| Inflammation | 3 (9) | 4 (9) | 7 (9) |
| Anoxia | 2 (6) | 3 (7) | 5 (7) |
| Admitted to intensive care unit, n (%) | 22 (69) | 27 (65) | 49 (65) |
| Admitted intensive care unit, median (IQR), days | 3 (1, 7) | 2 (1, 6) | 2 (1, 7) |
| Confirmatory cerebral imaging, n (%) e | 31 (94) | 36 (84) | 67 (88) |
| RH / LH | 11 (33) /13 (39) | 17 (40) /15 (35) | 28 (37) /28 (37) |
| Bilateral | 8 (24) | 9 (21) | 17 (22) |
| Cerebellum | 14 (42) | 12 (28) | 26 (34) |
| Subcortical white matter | 11 (33) | 9 (21) | 20 (26) |
| Brainstem | 8 (24) | 10 (23) | 18 (24) |
| Brain surgery f | 16 (48) | 19 (44) | 35 (46) |
| Brain surgery in the tumor group | 10 (83) | 15 (88) | 25 (86) |
| Chemotherapy | 4 (12) | 7 (16) | 11 (14) |
| Radiation therapy | 3 (9) | 5 (12) | 8 (11) |
| Received rehabilitation, n (%) g | 25 (83) | 36 (86) | 61 (85) |
| Rehabilitation initiation post insult, median (IQR), days | 3.5 (1, 7) | 4 (2, 7) | 4 (2, 7) |
| Medical examination and survey at baseline h | |||
| Disability; Severe/moderate/good recovery, n (%) | 10 (32) / 13 (42) / 8 (26) | 7 (17)/ 25 (60) / 10 (24) | 17 (23) / 38 (52) / n (25) |
| Neurological deficits (yes), n (%) | 17 (55) | 16 (37) | 33 (45) |
| Paralysis, n (%) | 19 (58) | 8 (19) | 27 (36) *** |
| Epilepsy, n (%) | 5 (15) | 0 (0) | 5 (7) ** |
| Fatigue, total score, median (IQR) i | 57 (50, 72) | 53 (35, 68) | 56 (40, 70) |
| Clinical fatigue, n (%) i | 22 (67) | 35 (81) | 57 (75) |
| Aid from the Educational Psychological Service (EPS) in school, n (%) j | 21 (68) | 21 (50) | 42 (58) |
| Academic performance, teacher, T score, mean (SD) (n = 69) k | 42 (6.3) | 46 (6.5) | 44 (6.7) * |
IQR, interquartile range; RH, right hemisphere; LH, left hemisphere; SD, standard deviation; EPS, Aid from the Educational Psychological Service, Intergroup differences in significance level: *0.05, **0.01, ***0.001.aSustaining pABI ≤ 7 years: early insult, EI. b Sustaining pABI > 7 years: late insult, LI. c Children living with both parents. d 73 out of 76 mothers (96%) stated their level of education. e Computed tomography (CT) and/or Magnetic resonance imaging (MRI) was conducted as part of routine clinical treatments. f In addition to participants with brain tumor, 3 with TBI and 7 with stroke had received brain surgery. g Rehabilitation defined as any in-patient rehabilitation (e.g., physiotherapy, occupational therapy) post-insult, related to the current diagnosis. h Medical examination at baseline was conducted as a standard clinical and neurological examination by a physician. i Fatigue was measured with the Pediatric Quality of Life Inventory-Multidimensional Fatigue Scale (PedsQL MFS, parent report) (140). Parents rated each item according to their child’s function the prior month (e.g., “Feels too tired to spend time with his/her friends”). Presented are reversed total score, linearly transformed to a 0–100 scale, with a clinical cut-off < 70 (141), where higher scores indicate less fatigue. j Aid from the Educational Psychological Service in the school setting was informed by the primary caregiver. k Academic performance was provided by the average score of teacher ratings from the Child Behavior Checklist- Teacher’s Report Form (142). The TRF provides scores of children’s performance in academic subjects using a 5-point scale ranging from Ratings: 1 = Far below average, 2 = Below average, 3 = Average, 4 = Above average, and 5 = Far above average. The TRF scores were converted into T-scores, M = 50, SD = 10.