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Table 6 Proportion of caregivers who reported negatively impacted relationships

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)

Group A (n = 10)

Group B (n = 11)

Group C (n = 10)

With Spouse/Partner

17 (50)

9 (45)

7 (53.9)

3 (30)

7 (63.7)

5 (50)

Between Your Children

13 (38.2)

8 (40)

5 (38.5)

3 (30)

2 (18.2)

5 (50)

With Other Immediate Family Members

14 (41.1)

8 (40)

6 (46.2)

3 (30)

6 (54.6)

4 (40)

With Your Other Children

13 (38.2)

9 (45)

3 (23.1)

2 (20)

5 (45.5)

4 (40)

With Your Child

3 (8.7)

2 (10)

1 (7.7)

0 (0)

2 (18.2)

1 (10)

Any familial relationship

27 (79.4)

16 (80)

10 (76.9)*

7 (70)

9 (81.8)

8 (80)**

  1. Results represent caregivers who selected “moderate”, “somewhat”, “significant” or “extremely” negative impact; 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: 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 the late infantile and juvenile groups = 1.000; **P-value between groups A, B, C = 0.873.
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172