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Table 1 Demographic characteristic of the study participants (N = 81 patient-caregiver pairs)

From: Social/economic costs and health-related quality of life in patients with spinal muscular atrophy (SMA) in Spain

  n (%)
No. of Patients (%) 81 (100)
 Type I 8 (9.87)
 Type II 60 (74.07)
 Type III 13 (16.06)
Gender
 Female 47 (58.02)
 Male 34 (41.98)
Age (mean) 7.22 (5.47)a
Age from the first symptom, mean (SD) 4.32 (2.50)
Type I 1.55 (1.06)
Type II 4.26 (2.35)
Type III 5.35 (2.79)
Education
 Educated at an ordinary school 21 (25.93)
 Educated at an ordinary center with special sessions 39 (48.15)
 Educated at a special needs education center 3 (3.70)
 Home schooled 5 (6.17)
 Nursery school 0.00
 Not received education 10 (12.35)
 Missing 3 (3.70)
Caregivers
No. of caregivers (N) 81 (100)
Gender  
 Male 7 (8.64)
 Female 36 (44.44)
 Missing 38 (46.92)
Age 40.29 (7.30)a
Working situation
 Employed 25 (30.87)
 Retired or pensioner 0
 Housewife/house husband 16 (19.75)
 Missing 40 (49.38)
Caregiving time (daily hours) 4.05b (8.22)c
 Barthel Index, median 39.1 (22.50)a
 Zarit-caregiver burden, median 34.53 (13.41)a
  1. Source: own elaboration; a Standard deviation. b Number of daily hours reported by the person of reference in the household (mother/father). c Number of daily hours of informal caregiving conditioned to hours of informal caregiving is higher than 0