Table 5.
Distribution of impairment severity, pain, and seizure problems from childhood to young adulthood by identified QoL trajectories in individuals with CP: SPARCLE cohort—France, Germany, Italy, and Sweden.
| Psychological well-being | Social relationships | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Group 1 | Group 2 | Group 3 | Group 1 | Group 2 | Group 3 | |||||||
| (n = 67) | (n = 22) | (n = 34) | (n = 65) | (n = 38) | (n = 16) | |||||||
| n | % | n | % | n | % | n | % | n | % | n | % | |
| Childhood | ||||||||||||
| GMFCS | ||||||||||||
| I–II | 32 | 47.8 | 14 | 63.6 | 15 | 44.1 | 37 | 56.9 | 15 | 39.5 | 8 | 50.0 |
| III | 12 | 17.9 | 3 | 13.6 | 7 | 20.6 | 12 | 18.5 | 7 | 18.4 | 2 | 12.5 |
| IV–V | 23 | 34.3 | 5 | 22.7 | 12 | 35.3 | 16 | 24.6 | 16 | 42.1 | 6 | 37.5 |
| BFMF | ||||||||||||
| I | 20 | 29.8 | 9 | 40.9 | 9 | 26.5 | 27 | 41.5 | 6 | 15.8 | 4 | 25.0 |
| II–III | 32 | 47.8 | 10 | 45.5 | 16 | 47.0 | 28 | 43.1 | 20 | 52.6 | 9 | 56.2 |
| IV–V | 15 | 22.4 | 3 | 13.6 | 9 | 26.5 | 10 | 15.4 | 12 | 31.6 | 3 | 18.8 |
| IQ* | ||||||||||||
| ≥70 | 35 | 52.2 | 10 | 45.4 | 20 | 58.8 | 44 | 67.7 | 12 | 31.6 | 8 | 50.0 |
| <70 | 32 | 47.8 | 12 | 54.6 | 14 | 41.2 | 21 | 31.3 | 26 | 68.4 | 8 | 50.0 |
| Seizure in the previous year | ||||||||||||
| No (with or without medication) | 60 | 89.6 | 17 | 77.3 | 27 | 79.4 | 57 | 87.7 | 27 | 71.0 | 16 | 100.0 |
| Seizures | 7 | 10.4 | 5 | 22.7 | 7 | 20.6 | 8 | 12.3 | 11 | 29.0 | 0 | 0.0 |
| Frequency of pain in the previous week | ||||||||||||
| None | 35 | 53.0 | 7 | 31.8 | 10 | 29.4 | 24 | 37.5 | 21 | 55.3 | 7 | 43.8 |
| Once or twice | 15 | 22.7 | 5 | 22.7 | 9 | 26.5 | 16 | 25.0 | 7 | 18.4 | 6 | 37.5 |
| Frequent | 16 | 24.3 | 10 | 45.5 | 15 | 44.1 | 24 | 37.5 | 10 | 26.3 | 3 | 18.7 |
| Missing | 1 | 0 | 0 | 1 | 0 | 0 | ||||||
| CP subtype* | ||||||||||||
| Unilateral spastic | 15 | 22.4 | 10 | 45.4 | 13 | 38.2 | 24 | 36.9 | 8 | 21.1 | 5 | 31.3 |
| Bilateral spastic | 34 | 50.7 | 8 | 36.4 | 15 | 44.1 | 31 | 47.7 | 15 | 39.5 | 9 | 56.2 |
| Dyskinetic | 13 | 19.4 | 2 | 9.1 | 6 | 17.7 | 7 | 10.8 | 11 | 28.9 | 2 | 12.5 |
| Ataxic | 5 | 7.5 | 2 | 9.1 | 0 | 0.0 | 3 | 4.6 | 4 | 10.5 | 0 | 0.0 |
| Adolescence | ||||||||||||
| GMFCS | ||||||||||||
| I–II | 31 | 46.3 | 14 | 63.6 | 18 | 52.9 | 37 | 56.9 | 17 | 44.7 | 8 | 50.0 |
| III | 12 | 17.9 | 1 | 4.6 | 4 | 11.8 | 11 | 16.9 | 4 | 10.5 | 2 | 12.5 |
| IV–V | 24 | 35.8 | 7 | 31.8 | 12 | 35.3 | 17 | 26.2 | 17 | 44.7 | 6 | 37.5 |
| BFMF | ||||||||||||
| I | 20 | 29.9 | 7 | 31.8 | 11 | 32.4 | 26 | 40 | 6 | 15.8 | 5 | 31.2 |
| II–III | 36 | 53.7 | 13 | 59.1 | 13 | 38.2 | 32 | 49.2 | 20 | 52.6 | 8 | 50.0 |
| IV–V | 11 | 16.4 | 2 | 9.1 | 10 | 29.4 | 7 | 10.8 | 12 | 31.6 | 3 | 18.8 |
| Seizures in the previous year | ||||||||||||
| No (with or without medication) | 60 | 89.5 | 14 | 63.6 | 26 | 76.5 | 57 | 87.7 | 25 | 65.8 | 14 | 87.5 |
| Seizures | 7 | 10.5 | 8 | 36.4 | 8 | 23.5 | 8 | 12.3 | 13 | 34.2 | 2 | 12.5 |
| Frequency of pain in the previous week | ||||||||||||
| None | 23 | 34.3 | 3 | 13.6 | 11 | 32.3 | 21 | 32.3 | 11 | 28.9 | 5 | 31.2 |
| Once or twice | 17 | 25.4 | 6 | 27.3 | 6 | 17.7 | 11 | 16.9 | 11 | 28.9 | 5 | 31.2 |
| Frequent | 27 | 40.3 | 13 | 59.1 | 17 | 50.0 | 33 | 50.8 | 16 | 42.2 | 6 | 37.5 |
| Young adulthood | ||||||||||||
| GMFCS | ||||||||||||
| I–II | 35 | 52.2 | 12 | 54.5 | 17 | 50.0 | 40 | 61.5 | 17 | 44.7 | 7 | 43.8 |
| III | 10 | 14.9 | 2 | 9.1 | 3 | 8.8 | 8 | 12.3 | 4 | 10.6 | 3 | 18.7 |
| IV–V | 22 | 32.9 | 8 | 36.4 | 14 | 41.2 | 17 | 26.2 | 17 | 44.7 | 6 | 37.5 |
| BFMF | ||||||||||||
| I | 21 | 31.3 | 7 | 31.8 | 13 | 38.2 | 29 | 44.6 | 7 | 18.4 | 4 | 25.0 |
| II–III | 28 | 41.8 | 10 | 45.5 | 11 | 32.4 | 26 | 40.0 | 16 | 42.1 | 8 | 50.0 |
| IV–V | 18 | 26.9 | 5 | 22.7 | 10 | 29.4 | 10 | 15.4 | 15 | 39.5 | 4 | 25.0 |
| Seizures in the previous year | ||||||||||||
| No (with or without medication) | 62 | 92.5 | 16 | 72.7 | 29 | 85.3 | 63 | 96.9 | 26 | 68.4 | 14 | 87.5 |
| Seizures | 5 | 7.5 | 6 | 27.3 | 5 | 14.7 | 2 | 3.1 | 12 | 31.6 | 2 | 12.5 |
| Frequency of pain in the previous week | ||||||||||||
| None | 27 | 40.3 | 2 | 9.1 | 5 | 14.7 | 16 | 24.6 | 15 | 39.5 | 2 | 12.5 |
| Once or twice | 16 | 23.9 | 5 | 22.7 | 5 | 14.7 | 17 | 26.2 | 5 | 13.1 | 2 | 12.5 |
| Frequent | 24 | 35.8 | 15 | 68.2 | 24 | 70.6 | 32 | 49.2 | 18 | 47.4 | 12 | 75.0 |
BFMF, Bimanual Fine Motor Function; GMFCS, Gross Motor Function Classification System; IQ, intelligence quotient; CP, cerebral palsy.
*
Data only provided in childhood.