Distribution of impairments, sociodemographic characteristics, pain, emotional difficulties score and total stress score
| Self-reported (n=429) | Parent-reported (n=657) | |||
|---|---|---|---|---|
| n | (%) | n | (%) | |
| Impairments of young people | ||||
| Walking ability as captured by gross motor function | ||||
| I. Walks without limitation | 199 | (46%) | 226 | (34%) |
| II. Walks with limitation | 84 | (20%) | 113 | (17%) |
| III. Walks with assistive devices | 58 | (14%) | 85 | (13%) |
| IV. Unable to walk, limited self-mobility | 50 | (12%) | 90 | (14%) |
| V. Unable to walk, severely limited self-mobility | 37 | (9%) | 143 | (22%) |
| Information not available | 1 | (0%) | 0 | (0%) |
| Seizures | ||||
| No seizures, not on medication | 367 | (86%) | 464 | (71%) |
| No seizures, on medication | 23 | (5%) | 73 | (11%) |
| Seizures less than once a month | 19 | (4%) | 46 | (7%) |
| Seizures between once a month and once a week | 9 | (2%) | 24 | (4%) |
| Seizures more than once a week | 6 | (1%) | 45 | (7%) |
| Information not available | 5 | (1%) | 5 | (1%) |
| Intellectual ability | ||||
| IQ > 70 | 286 | (67%) | 300 | (46%) |
| IQ 50–70 | 129 | (30%) | 169 | (26%) |
| IQ < 50 | 13 | (3%) | 187 | (28%) |
| Information not available | 1 | (0%) | 1 | (0%) |
| Cerebral palsy subtype | ||||
| Unilateral spastic | 175 | (41%) | 208 | (32%) |
| Bilateral spastic | 208 | (48%) | 354 | (54%) |
| Dyskinetic | 28 | (7%) | 62 | (9%) |
| Ataxic | 13 | (3%) | 28 | (4%) |
| Information not available | 5 | (1%) | 5 | (1%) |
| Sociodemographic characteristics | ||||
| Regions | ||||
| Southeast France | 41 | (10%) | 61 | (9%) |
| Southwest France | 38 | (9%) | 57 | (9%) |
| Southwest Ireland | 52 | (12%) | 76 | (12%) |
| West Sweden | 40 | (9%) | 66 | (10%) |
| North England | 73 | (17%) | 107 | (16%) |
| Northern Ireland | 64 | (15%) | 88 | (13%) |
| East Denmark | 53 | (12%) | 86 | (13%) |
| Central Italy | 17 | (4%) | 42 | (6%) |
| Northwest Germany | 51 | (12%) | 74 | (11%) |
| Gender | ||||
| Boys | 249 | (58%) | 376 | (57%) |
| Girls | 180 | (42%) | 281 | (43%) |
| Age in years | ||||
| <13 | 27 | (6%) | 45 | (7%) |
| 13 | 99 | (23%) | 137 | (21%) |
| 14 | 85 | (20%) | 135 | (21%) |
| 15 | 91 | (21%) | 131 | (20%) |
| 16 | 76 | (18%) | 114 | (17%) |
| 17 | 47 | (11%) | 83 | (13%) |
| >17 | 4 | (1%) | 12 | (2%) |
| Information not available | 5 | (1%) | 9 | (1%) |
| Pain | ||||
| Frequency of pain in previous week | ||||
| None of the time | 133 | (31%) | 180 | (27%) |
| Once or twice | 143 | (33%) | 161 | (25%) |
| A few times | 79 | (18%) | 140 | (21%) |
| Fairly often | 29 | (7%) | 64 | (10%) |
| Very often | 16 | (4%) | 38 | (6%) |
| Every day | 29 | (7%) | 74 | (11%) |
| Severity of pain in previous week | ||||
| None | 130 | (30%) | 180 | (27%) |
| Very mild | 94 | (22%) | 100 | (15%) |
| Mild | 96 | (22%) | 133 | (20%) |
| Moderate | 64 | (15%) | 176 | (27%) |
| Severe | 26 | (6%) | 55 | (8%) |
| Very severe | 19 | (4%) | 13 | (2%) |
| Emotional difficulties score (by quartile)* | ||||
| 0–1 | 98 | (23%) | 179 | (27%) |
| >1–3 | 146 | (34%) | 206 | (31%) |
| >3–5 | 109 | (25%) | 164 | (25%) |
| >5–10 | 72 | (17%) | 106 | (16%) |
| Information not available | 4 | (1%) | 2 | (0%) |
| Total stress score (by quartile)† | ||||
| 36–64 | 127 | (30%) | 163 | (25%) |
| 65 80 | 118 | (28%) | 162 | (25%) |
| 81–97 | 92 | (21%) | 167 | (25%) |
| 98–147 | 81 | (19%) | 152 | (23%) |
| Information not available | 11 | (3%) | 13 | (2%) |
*Higher scores indicate more emotional difficulties.
†Higher scores indicate more stress.