Table 2.
PedsQL™ Family Impact Module
| Sample | Total Impact Score | Parent HRQOL | Family Functioning |
|---|---|---|---|
| MLD and PCH2 (n = 43/43/42) | 57.3*** (17.5) | 60.8*** (18.3) | 49.8*** (22.2) |
| Late-infantile MLD (n = 8/8/8) | 48.3*** (15,3) | 54.8*** (20.8) | 35.4*** (19.2) |
| Juvenile MLD (n = 19/19/18) | 59.1*** (19.6) | 61.1** (20.9) | 56.2** (22.0) |
| PCH2 (n = 16/16/16) | 59.7*** (15.5) | 63.4* (15.2) | 49.9*** (21.7) |
| MLD Mothers (n = 25/25/24) | 53.1*** (18.8) | 55.6*** (19.7) | 47.8*** (24.3) |
| MLD Fathers (n = 22/22/22) | 58.6*** (19.3) | 63.0* (21.5) | 51.9*** (21.5) |
| PCH2 Mothers (n = 16/16/16) | 55.9*** (17.9) | 58.6** (17.8) | 47.4*** (23.6) |
| PCH2 Fathers (n = 13/13/13) | 67.7 (16.1) | 73.6 (16.6) | 56.4* (24.3) |
| No chronic condition (n = 546) [26] | 73.2 (13.6) | 71.2 (14.9) | 67.6 (18.4) |
Standard deviation presented in parentheses. Different case numbers result from the fact that only sufficiently completed scales could be used. Higher values equal better functioning/less negative impact
PedsQL™, Pediatric Quality of Life Inventory [23]; MLD, metachromatic leukodystrophy; PCH2, pontocerebellar hypoplasia type 2; HRQOL, health-related quality of life
*P value is significant at < 0.05 level; **P value is significant at < 0.01 level; ***P value is significant at < 0.001 level. Comparison between individual samples and the “no chronic condition” sample