Table 6.
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)** |
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.