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Table 4 Hospital Visits and Hospital Stays by Time Since Diagnosis

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

 

Group A (n = 10)

Group B (n = 11)

Group C (n = 10)

P-value*

Number of outpatient visits in the previous 12 months

Mean (SD)

56.4 (62.9)

12.6 (12.7)

21.6 (21.1)

 

Median (range)

38.0 (0 – 200)

8.0 (1 – 40)

16.0 (0 – 65)

0.157

Number of outpatient visits in the previous 4 weeks

Mean (SD)

6.1 (6.1)

0.6 (0.9)

1.9 (1.7)

 

Median (range)

3.0 (0 – 16)

0.0 (0 – 3)

1.5 (0 – 5)

0.009

Number of inpatient hospital visits in the previous 12 months

Mean (SD)

9.1 (16.3)

2.0 (1.8)

1.3 (2.0)

 

Median (range)

3.5 (1 – 55)

2.0 (0 – 5)

0.5 (0 – 6)

0.012

Number of inpatient hospital visits in the previous 4 weeks

Mean (SD)

1.1 (1.4)

0.5 (0.7)

0.3 (0.7)

 

Median (range)

1.0 (0 – 4)

0.0 (0 – 2)

0.0 (0 – 2)

0.192

Inpatient hospital stays (days) in the previous 12 months

Mean (SD)

24.2 (27.2)

6.7 (8.4)

4.9 (6.8)

 

Median (range)

17.5 (3 – 95)

5.0 (0 – 28)

1.0 (0 – 15)

0.011

Inpatient hospital stays (days) in the previous 4 weeks

Mean (SD)

4.2 (5.6)

0.7 (1.3)

0.1 (0.3)

 

Median (range)

1.5 (0 – 14)

0.0 (0 – 4)

0.0 (0 – 1)

0.033

  1. Group A: Caregivers of individuals with MLD who were diagnosed within the past ≤ 2 years; Group B: Caregivers of individuals with MLD who were > 2 and ≤ 6 years since diagnosis; Group C: Caregivers of individuals with MLD who were > 6 years since diagnosis; *P-value between groups A, B, C