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Table 2 PedsQL™ Family Impact Module

From: The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

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)
  1. 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
  2. PedsQL™, Pediatric Quality of Life Inventory [23]; MLD, metachromatic leukodystrophy; PCH2, pontocerebellar hypoplasia type 2; HRQOL, health-related quality of life
  3. *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