| All patients n = 108 |
---|---|
Patient characteristics | |
Age in years1 | 13.5 ± 10.0, range 1.2–46.2 |
Sex | % (n) |
 Male | 49.1 (53) |
 Female | 50.9 (55) |
Genetics | % (n) |
 SCN1A-mutation | 96.3 (104) |
 Unknown or not available | 2.8 (3) |
Epilepsy characteristics | |
 Seizure days per month1 | 8.5 ± 9.8 range 0–30 |
 Nocturnal seizures1 | 8.4 ± 25.6 range 0–208 |
Nocturnal seizure frequency | % (n) |
 At least one per night | 9.3 (10) |
 At least one per week | 21.3 (23) |
 At least one per month | 16.7 (18) |
 At least one per 6 months | 11.1 (12) |
 At least one per year | 13.0 (14) |
 No seizures for more than a year | 25.9 (28) |
GTCS frequency | % (n) |
 At least one per day | 4.6 (5) |
 At least one per week | 26.9 (29) |
 At least one per month | 25.0 (27) |
 At least one per 6 months | 17.6 (19) |
 At least one per year | 11.1 (12) |
 No seizures for more than a year | 13.0 (14) |
Mean number of ASMs1 | 3.2 ± 1.2 range 1–5 |
Living conditions | % (n) |
 With mother and father | 71.3 (77) |
 Only with mother | 12.0 (13) |
 In a nursing home | 2.8 (3) |
 Other | 13.9 (15) |
Caregiver characteristics | |
 Age of mother (years, n = 108)1 | 44.7 ± 10.6 |
 Age of father (years, n = 108)1 | 47.3 ± 10.6 |
Mother's professional situation | % (n) |
 Housemaker | 28.7 (31) |
 Employed | 46.3 (50) |
 Student | 1.9 (2) |
 Receiving pension | 8.3 (9) |
Father's professional situation | % (n) |
 Housemaker | 0.9 (1) |
 Employed | 85.2 (92) |
 Student | 0.0 (0) |
 Receiving pension | 5.5 (6) |
Change in mother's professional situation due to child's DS | % (n) |
 No change | 23.1 (25) |
 Yes, quit her work | 33.3 (36) |
 Yes, different job | 10.2 (11) |
 Yes, reduction of working hours | 26.9 (29) |
Change in father's professional situation due to child's DS | % (n) |
 No change | 88 (95) |
 Yes, quit his work | 0.9 (1) |
 Yes, different job | 1.9 (2) |
 Yes, reduction of working hours | 2.8 (3) |
Use of pediatric intensive care service | % (n) |
 Yes | 16.7 (18) |
 No | 81.5 (88) |