Table 7.
Social impact of MLD
| 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 |
*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