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Table 7 Social impact of MLD

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

 

Total (N = 34)

Late infantile MLD (n = 20)

Juvenile MLD (n = 13)

P -value†

Group A (n = 10)

Group B (n = 11)

Group C (n = 10)

P-value††

Changes in social life*

Just As Active Socially

6 (17.6)

3 (15)

3 (23.1)

0.659

2 (20)

2 (18.2)

2 (20)

1.000

Miss Many Leisure Activities

19 (55.9)

10 (50)

8 (61.6)

0.722

4 (40)

8 (72.7)

5 (50)

0.357

Made Significant Lifestyle Changes

32 (94.1)

19 (95)

12 (92.3)

1.000

9 (90)

11 (100)

9 (90)

0.527

Satisfaction with personal life

Not at all

4 (11.8)

2 (10)

2 (15.4)

 

2 (20)

2 (18.2)

0 (0)

 

A little

8 (23.5)

5 (25)

3 (23.1)

 

2 (20)

2 (18.2)

2 (20)

 

Somewhat

9 (26.5)

6 (30)

3 (23.1)

 

3 (30)

1 (9.1)

4 (40)

 

Quite

7 (20.6)

3 (15)

4 (30.8)

 

3 (30)

1 (9.1)

3 (30)

 

Very

6 (17.6)

4 (20)

1 (7.7)

 

0 (0)

5 (45.5)

1 (10)

 

Extremely

0 (0)

0 (0)

0 (0)

 

0 (0)

0 (0)

0 (0)

 

Dissatisfied with personal life**

21 (61.8)

13 (65)

8 (61.6)

1.000

7 (70)

5 (45.5)

6 (60)

0.596

Ability to keep up with responsibilities and commitments

Always

8 (23.5)

3 (15)

5 (38.5)

 

2 (20)

2 (18.2)

2 (20)

 

Often

12 (35.3)

7 (35)

5 (38.5)

 

3 (30)

4 (36.4)

5 (50)

 

Sometimes

10 (29.4)

7 (35)

2 (15.4)

 

4 (40)

3 (27.3)

2 (20)

 

Rarely

4 (11.8)

3 (15)

1 (7.7)

 

1 (10)

2 (18.2)

1 (10)

 

Never

0 (0)

0 (0)

0 (0)

 

0 (0)

0 (0)

0 (0)

 

Usually#

20 (58.8)

10 (50)

10 (76.9)

0.159

5 (50)

6 (54.6)

7 (70)

0.732

  1. *Results represent caregivers who selected “agree” or “strongly agree” to social life change since child’s MLD diagnosis; **Sum of “not at all”, “a little” and “somewhat” satisfied with personal life; # Sum of “always” and “often” able to keep up with family responsibilities and social commitments in the previous 4-week period; Caregiver of child with borderline late infantile/juvenile MLD (n = 1) was not included in the late infantile versus juvenile analysis; Caregivers who only had one deceased child (n = 3) were not included in the Group A-C analysis; Group A: 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 late infantile and juvenile groups; ††P-value between groups A, B, C