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Table 1 Sociodemographic and clinical characteristics of patients and caregivers

From: Sleep quality, anxiety, symptoms of depression, and caregiver burden among those caring for patients with Dravet syndrome: a prospective multicenter study in Germany

 

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)

  1. 1Mean ± standard deviation; ASM, anti-seizure medication; DS, Dravet syndrome