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Table 2 Caregiver ED-D5-5L Dimension Scores: Proportion Reporting Any Problems

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

 

US (n = 8)

Germany (n = 7)

UK (n = 6)

France (n = 10)

Mobility

0%

14.3%

16.7%

0%

Population norm

18.5%

15.9%

18.4%

13.4%

Self-care

0%

0%

16.7%

0%

Population norm

3.7%

2.7%

4.3%

4%

Usual activities

37.5%

71.4%

33.3%

30%

Population norm

17.9%

9.9%

16.3%

10%

  

(p < 0.001)

  

Pain/discomfort

75%

42.9%

66.7%

70%

Population norm

48.3%

27.6%

33%

35.9%

    

(p = 0.042)

Anxiety/depression

75%

57.1%

83.3%

80%

Population norm

23.2%

4.3%

21%

15%

  

(p < 0.001)

(p = 0.002)

(p < 0.001)