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. 2022 Sep 2;17:329. doi: 10.1186/s13023-022-02501-8

Table 6.

Proportion of caregivers who reported negatively impacted relationships

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.