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Table 3 Hospital visits and hospital stays for MLD patients

From: An international study of caregiver-reported burden and quality of life in metachromatic leukodystrophy

 

Total (N = 31)

US (n = 10)

Germany (n = 5)

UK (n = 5)

France (n = 8)

Number of outpatient visits in the previous 12 months

Mean (SD)

29.6 (41.7)

30.2 (26.1)

5.8 (3.8)

16.8 (17.6)

62.5 (65. 6)

Median (range)

15.0 (0 – 200)

22.0 (0 – 90.0)

5.0 (1.0 – 11.0)

12.0 (0 – 40.0)

43.0 (5.0 – 200)

Number of outpatient visits in the previous 4 weeks

Mean (SD)

2.8 (4.2)

3.2 (3.5)

0.6 (0.5)

1.2 (1.6)

5.8 (6.3)

Median (range)

1.0 (0 – 16)

2.5 (0 – 12.0)

1.0 (0 – 1.0)

1.0 (0 – 4.0)

2.0 (1.0 – 16.0)

Number of inpatient hospital visits in the previous 12 months

Mean (SD)

4.1 (9.7)

2.9 (3.0)

2.4 (2.3)

2.2 (1.8)

7.8 (19.1)

Median (range)

2.0 (0 – 55)

2.0 (0 – 9)

2.0 (0 – 6.0)

2.0 (0 – 5.0)

0.5 (0 – 55.0)

Number of inpatient hospital visits in the previous 4 weeks

Mean (SD)

0.6 (1.0)

0.7 (0.9)

0.4 (0.5)

0.6 (0.9)

0.6 (1.4)

Median (range)

0 (0 – 4)

0.5 (0 – 3.0)

0 (0 – 1.0)

0 (0 – 2.0)

0 (0- 4.0)

Inpatient hospital stays (days) in the previous 12 months

Mean (SD)

11.8 (18.3)

10.7 (10.8)

10.8 (14.1)

12.0 (10.5)

15.9 (32.7)

Median (range)

5.0 (0 – 95)

9.5 (0 – 33.0)

5.0 (0 – 35.0)

10.0 (0 – 28.0)

1.5 (0 – 95.0)

Inpatient hospital stays (days) in the previous 4 weeks

Mean (SD)

1.6 (3.7)

3.8 (5.8)

1.0 (1.7)

0.6 (0.9)

0.6 (1.4)

Median (range)

0 (0 – 14)

0.5 (0 – 14.0)

0 (0 – 4.0)

0 (0 – 2.0)

0 (0- 4.0)