Table 1
DISABKIDS final scores (transformed to a scale of 1-100) by different modules, items and demographic properties.
| SELF - REPORTS Transformed scores (0-100; mean, SD) | ALL | CHILDREN | ADOLESCENTS | MALES | FEMALES | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| valid items | score | valid items | score | valid items | score | valid items | score | valid items | score | ||
| DCGM-37-S | |||||||||||
| Independence | 48 | 70.4, SD 20.1 | 26 | 75.6, SD 15.7 | 22 | 64.2, SD 23.1 | 23 | 69.4, SD 22.8 | 25 | 71.3, SD 17.6 | |
| Physical | 48 | 74.6, SD 18.9 | 26 | 80.3, SD 11.9 | 22 | 68.0, SD 23.5 | 23 | 74.5, SD 21.2 | 25 | 76.9, SD 12.9 | |
| Emotion | 48 | 85.3, SD 17.7 | 26 | 91.1, SD 9.8 | 22 | 78.6, SD 22.4 | 23 | 85.2, SD 20.5 | 25 | 71.5, SD 34.9 | |
| Exclusion | 48 | 80.2, SD 17.0 | 26 | 84.9, SD 10.5 | 22 | 74.6, SD 21.3 | 23 | 78.3, SD 17.7 | 25 | 69.5, SD 16.2 | |
| Inclusion | 48 | 65.7, SD 19.5 | 26 | 70.4, SD 16.9 | 22 | 60.2, SD 21.3 | 23 | 61.6, SD 22.2 | 25 | 82.0, SD 16.5 | |
| Medication | 14 | 78.6, SD 26.8 | 7 | 83.2, SD 12.4 | 7 | 74.0, SD 36.9 | 9 | 82.5, SD 22.6 | 5 | 85.4, SD 15.3 | |
| General | 48 | 75.6, SD 16.0 | 26 | 80.8, SD 10.0 | 22 | 69.4, SD 19.5 | 23 | 74.2, SD 19.0 | 25 | 74.8, SD 17.2 | |
| DCSM-CPM-S | |||||||||||
| Impact | 44 | 76.1, SD 15.0 | 23 | 79.3, SD 10.4 | 21 | 72.6, SD 18.4 | 20 | 74.5, SD 18.3 | 24 | 77.5, SD 11.8 | |
| Communication | 44 | 92.3, SD 20.6 | 23 | 98.9, SD 3.6 | 21 | 85.1, SD 28.1 | 20 | 90.0, SD 25.2 | 24 | 94.3, SD 16.1 | |
| Total | 44 | 78.8, SD 14.7 | 23 | 82.6, SD 8.7 | 21 | 74.7, SD 18.7 | 20 | 77.1, SD 18.7 | 24 | 80.3, SD 10.6 | |
| PROXY – REPORTS Transformed scores (0-100; mean, SD) | ALL | CHILDREN | ADOLESCENTS | MALES | FEMALES | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| valid items | score | valid items | score | valid items | score | valid items | score | valid items | score | ||
| DCGM-37-S | |||||||||||
| Independence | 83 | 58.1, SD 24.4 | 37 | 67.8, SD 20.8 | 46 | 50.3, SD 24.5 | 50 | 54.8, SD 24.6 | 33 | 63.1, SD 23.7 | |
| Physical | 83 | 66.2, SD 21.2 | 37 | 71.2, SD 17.1 | 46 | 62.1, SD 23.3 | 50 | 63.38, SD 22.5 | 33 | 70.4, SD 17.7 | |
| Emotion | 80 | 78.3, SD 20.4 | 36 | 82.7, SD 16.8 | 45 | 74.7, SD 22.5 | 47 | 77.9, SD 22.5 | 33 | 78.9, SD 17.3 | |
| Exclusion | 82 | 76.5, SD 19.9 | 36 | 82.5, SD 13.7 | 46 | 71.7, SD 22.8 | 49 | 73.6, SD 21.9 | 33 | 80.8, SD 15.8 | |
| Inclusion | 83 | 53.2, SD 24.5 | 36 | 65.2, SD 19.2 | 47 | 44.0, SD 24.3 | 49 | 49.9, SD 24.8 | 34 | 58.0, SD 23.7 | |
| Medication | 34 | 79.8, SD 21.0 | 15 | 79.8, SD 24.8 | 19 | 79.8, SD 18.3 | 23 | 78.7, SD 21.7 | 11 | 82.1, SD 20.5 | |
| General | 82 | 66.9, SD 18.2 | 36 | 75.1, SD 12.5 | 46 | 60.5, SD 19.5 | 49 | 64.8, SD 19.2 | 33 | 70.1, SD 16.3 | |
| DCSM-CPM-S | |||||||||||
| Impact | 72 | 71.0, SD 17.3 | 33 | 74.5, SD 15.6 | 39 | 68.1, SD 18.3 | 20 | 72.1, SD 16.0 | 22 | 76.9, SD 11.1 | |
| Communication | 74 | 78.0, SD 29.2 | 33 | 87.9, SD 21.9 | 41 | 70.1, SD 32.0 | 20 | 88.1, SD 24.5 | 24 | 95.8, SD 12.6 | |
| Total | 74 | 72.6, SD 16.9 | 33 | 76.8, SD 13.6 | 41 | 69.2, SD 18.6 | 20 | 74.8, SD 14.9 | 24 | 80.9, SD 9.3 | |
Abbreviations: DISABKIDS Chronic Generic Measure Self / Proxy (DCGM-37-S/-P); DISABKIDS Condition Specific Module - Cerebral Palsy Module Self / Proxy (DCSM-CPM-S/-P)
Table 2
Demographic and health-related data of 91 participants.
| All participants - proxy reports | Self-reported participants | |||||
|---|---|---|---|---|---|---|
| Children (8-12 y) N 43 (47.3%) | Adolesc. (13-17 y) N 48 (52.7%) | All N 91 | Children (8-12 y) N 26 (54.2%) | Adolesc. (13-17 y) N 22 (45.8%) | All N 48 | |
| Age (mean) | 10 y 6 mo, SD 1.2 | 14 y, SD 0.9 | 12 y 4 mo, SD 2.02 | 10 y 8 mo, SD 1.1 | 13 y 11mo, SD 0.8 | 12 y 2 mo, SD 1.9 |
| Gender | ||||||
| male | 26 (23.3%) | 27 (56.3%) | 53 (58.2%) | 13 (50.0%) | 10 (45.5%) | 23 (47.9%) |
| female | 17 (39.5%) | 21 (43.8%) | 38 (41.8%) | 13 (50.0%) | 12 (54.5%) | 25 (52.1%) |
| CP classification | ||||||
| spastic | 35 (81.4%) uni 14 (33%) | 43 (89.6%) uni 11 (23%) | 78 (85.7%) uni 25 (27%) | 24 (92.3%) uni 13 (50%) | 22 (100%) uni 7 (32%) | 46 (95.8%) uni 20 (42%) |
| dyskinetic dystonia | 7 (16.3%) | 4 (8.3%) | 11 (12.1%) | 2 (7.6%) | / | 2 (4.2%) |
| dys.choreoathetosis | / | 1 (2.1%) | 1 (1.1%) | / | / | / |
| ataxic | 1 (2.3%) | / | 1 (1.1%) | / | / | / |
| GMFCS | ||||||
| I | 18 (41.9%) | 11 (22.9%) | 29 (31.9%) | 16 (61.5%) | 8 (36.4%) | 24 (50%) |
| II | 10 (23.2%) | 10 (20.8%) | 20 (22.0%) | 7 (26.9%) | 7 (31.8%) | 14 (29.2%) |
| III | 3 (7.0%) | 8 (16.7%) | 11 (12.1%) | 1 (3.8%) | 4 (18.2%) | 5 (10.4%) |
| IV | 7 (16.3%) | 8 (16.7%) | 15 (16.5%) | 2 (7.7%) | 3 (13.6%) | 5 (10.4%) |
| V | 5 (11.6%) | 11 (22.9%) | 16 (17.6%) | / | / | / |
| IQ | ||||||
| > 70 | 25 (58.1%) | 21 (43.8%) | 48 (52.7%) | 26 (100%) | 22 (100%) | 48 (100%) |
| 50-70 | 7 (16.3%) | 10 (20.8%) | 15 (16.5%) | / | / | / |
| 20-50 | 7 (16.3%) | 11 (22.9%) | 18 (19.8%) | / | / | / |
| < 20 | 4 (9.3%) | 6 (12.5%) | 10 (11.0%) | / | / | / |
| Epilepsy | 15 (34.9%) | 17 (35.4%) | 32 (35.2%) | 3 (11.5%) | 3 (13.6%) | 6 (12.5%) |
| Speech disorder | 19 (44.2%) | 22 (45.8%) | 41 (45.1%) | 7 (26.9%) | 6 (27.3%) | 13 (27.1%) |
| Attention disorder | 14 (32.6%) | 11 (22.9%) | 25 (27.5%) | 10 (38.5%) | 5 (22.7%) | 15 (31.3%) |
| Visual impairment | 15 (34.9%) | 19 (39.6%) | 34 (37.4%) | 7 (26.9%) | 9 (40.9%) | 16 (33.3%) |
| - severe | 2 (4.7%) | 2 (4.2%) | 4 (4.4%) | 1 (3.8%) | / | 1 (2.1%) |
| Hearing impairment | 4 (9.3%) | 3 (6.3%) | 7 (7.7%) | 1 (3.8%) | 1 (4.5%) | 2 (4.2%) |
| - severe | 2 (4.7%) | 1 (2.1%) | 3 (3.3%) | 1 (3.8%) | 1 (4.5%) | 2 (4.2%) |
| Reporting pain | 7 (16.3%) | 14 (29.2%) | 21 (23.1%) | 2 (7.7%) | 5 (22.7%) | 7 (14.6%) |
| Disrupted sleep | 8 (18.6%) | 12 (25.0%) | 20 (22.0%) | 2 (7.7%) | 1 (4.5%) | 3 (6.3%) |
| Gastrostomy | 1 (2.3%) | / | 1 (1.1%) | / | / | / |
| Reduced bone density | 4 (9.3%) | 5 (10.4%) | 9 (10.0%) | / | / | / |
Abbreviations: the number of cases (N); years (y); months (mo); unilateral (uni); Gross Motor Function Classification Scale (GMFCS); intelligence quotient (IQ)
Table 3
Implemented interventions and socio-economic data of 91 participants.
| All participants - proxy reports | Self-reported participants | |||||
|---|---|---|---|---|---|---|
| Children (8-12 y) N 43 (47.3%) | Adolesc. (13-17 y) N 48 (52.7%) | All N 91 | Children (8-12 y) N 26 (54.2%) | Adolesc. (13-17 y) N 22 (45.8%) | All N 48 | |
| Interventions: | 3.9 per person (min 1, max 11) | / | / | / | ||
| Neurodevelopmental th. | 91 (100%) | / | / | / | ||
| - age at onset | 65 (71% ) < 6 months, | / | / | / | ||
| 77 (85%) <12 months | / | / | / | |||
| Physiotherapy | 69 (75.8%) | / | / | / | ||
| Occupational therapy | 48 (52.7%) | / | / | / | ||
| Speech-language therapy | 31 (43.1%) | / | / | / | ||
| Special pedagogy | 25 (27.5%) | / | / | / | ||
| Hypo therapy | 20 (21.9%) | / | / | / | ||
| Hydrotherapy | 17 (18.7%) | / | / | / | ||
| Psychological therapy | 11 (12.1%) | / | / | / | ||
| Social pedagogy | 9 (9.8%) | / | / | / | ||
| Complementary methods | 7 (7.7%) | / | / | / | ||
| Orthopedic therapy | 3 (3.3%) | / | / | / | ||
| Typhlopedagogy | 2 (2.2%) | / | / | / | ||
| Surdopedagogy | 2 (2.2%) | / | / | / | ||
| Education (stage): | no data | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | no data | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 |
| - mother (N) | 12 | 1 | 3 | 6 | 28 | 13 | 10 | 17 | 1 | 9 | 0 | 1 | 3 | 14 | 7 | 3 | 11 | 0 |
| (%) | 13 | 1 | 3 | 7 | 31 | 14 | 11 | 19 | 1 | 19 | 0 | 2 | 6 | 29 | 15 | 6 | 23 | 0 |
| - father (N) | 13 | 0 | 5 | 9 | 30 | 16 | 4 | 13 | 1 | 8 | 0 | 2 | 5 | 14 | 11 | 1 | 7 | 0 |
| (%) | 14 | 0 | 6 | 10 | 33 | 18 | 4 | 14 | 1 | 17 | 0 | 4 | 10 | 29 | 23 | 2 | 15 | 0 |
| Unemployment: | ||||||
| - mother | 13 (30.2%) | 20 (41.7%) | 33 (36.3%) | 7 (26.9%) | 6 (27.3%) | 13 (27.1%) |
| - mother (part time) | 6 (14.0%) | 2 (4.2%) | 8 (8.8%) | 2 (7.7%) | 1 (4.5%) | 3 (6.3%) |
| - father | 4 (9.3%) | 5 (10.4%) | 9 (9.9%) | / | 1 (4.5) | 1 (2.1%) |
| - both | 2 (4.7%) | 3 (6.3%) | 5 (5.5%) | / | 1 (4.5%) | 1 (2.1%) |
| Financial support | ||||||
| - lost income substitute | 8 (18.6%) | 20 (41.7%) | 28 (30.8%) | 1 (3.8%) | 5 (22.7%) | 6 (12.5%) |
| - child care support | 25 (58.1%) | 36 (75.0%) | 61 (67.0%) | 10 (38.5%) | 11 (50.0%) | 21 (43.8%) |
| Child residence | ||||||
| - home | 41 (95.3%) | 45 (93.8%) | 86 (94.5%) | 26 (100%) | 22 (100%) | 48 (100%) |
| - day care centre | 1 (2.3%) | 1 (2.1%) | 2 (2.2%) | / | / | / |
| - 24h centre | 1 (2.3%) | 2 (4.2%) | 3 (3.3%) | / | / | / |
| Schooling: | ||||||
| - regular | 25 (58.1%) | 22 (45.8%) | 47 (51.6%) | 25 (96.2%) | 22 (100%) | 47 (97.9%) |
| - adjusted program | 18 (41.9%) | 26 (54.2%) | 44 (48.4%) | 1 (3.8%) | / | 1 (2.1%) |
Abbreviations: the number of cases (N); years (y)