Table 4 Comparison of individual CSS item scores to number one caregiver concern
| Â | Â | Number 1 concern | ||
|---|---|---|---|---|
|  |  | Communication (n = 226, 35.3%) | Seizures (n = 81, 12.6%) | Hand Use (n = 35, 5.5%) |
| Â | Â | CSS score (n, %) | CSS score (n, %) | CSS score (n, %) |
CSS Language | 0—Preserved, contextual | 0 (0.0%) | 1 (1.2%) | 0 (0.0%) |
1—Short phrases only | 2 (0.9%) | 1 (1.2%) | 0 (0.0%) | |
2—Single words | 26 (11.5%) | 5 (6.2%) | 0 (0.0%) | |
3—Vocalization, babbling | 140 (61.9%) | 41 (50.6%) | 27 (77.1%) | |
4—Screaming, no utterances | 58 (25.7%) | 33 (40.7%) | 8 (22.9%) | |
CSS Seizures | 0—Absent | 126 (55.8%) | 1 (1.2%) | 23 (65.7%) |
1— < Monthly | 42 (18.6%) | 10 (12.3%) | 4 (11.4%) | |
2— < Weekly to monthly | 21 (9.3%) | 10 (12.3%) | 4 (11.4%) | |
3—Weekly | 15 (6.6%) | 22 (27.2%) | 2 (5.7%) | |
4—More than weekly | 10 (4.4%) | 10 (12.3%) | 1 (2.9%) | |
5—Daily (intractable) | 12 (5.3%) | 28 (34.6%) | 1 (2.9%) | |
CSS Hand Use | 0—Conserved | 29 (12.8%) | 3 (3.7%) | 4 (11.4%) |
1—Acquired on time, partially conserved | 37 (16.4%) | 7 (8.6%) | 7 (20.0%) | |
2—Acquired late, partially conserved | 25 (11.1%) | 7 (8.6%) | 1 (2.9%) | |
3—Acquired and lost | 120 (53.1%) | 56 (69.1%) | 20 (57.1%) | |
4—Never acquired | 15 (6.6%) | 8 (9.9%) | 3 (8.6%) | |