Research Article

The Impact of Raising Children with Barth Syndrome on Parental Health-Related Quality of Life and Family Functioning: Preliminary Reliability and Validity of the PedsQL™ Family Impact Module

Table 3

Mean score differences of the PedsQL FIM between the unaffected and BTHS groups.

UnadjustedaMultivariate adjustmentbPS-IPTW adjustmentc
Unaffected
()
BTHS
()
Mean difference
(SE)
Mean difference
(SE)
Mean difference
(SE)

Parental HRQoL76.67 (15.04)61.40 (21.59)15.27 (4.46).001216.27 (5.42).003925.65 (6.90).0005
 Physical functioning74.78 (16.66)60.60 (26.29)14.18 (5.29).009913.01 (6.39).046121.73 (9.16).0214
 Emotional functioning75.64 (16.66)59.39 (21.49)16.24 (4.50).000618.53 (5.76).002127.51 (6.16)<.0001
 Social functioning78.20 (21.64)61.09 (27.12)17.10 (5.74).004019.97 (7.10).006634.91 (8.67).0002
 Cognitive functioning78.07 (16.04)63.78 (25.28)14.28 (5.09).007113.24 (6.43).043718.90 (8.59).0322
Communication87.39 (15.51)59.09 (17.25)28.30 (3.86)<.000130.13 (4.90)<.000138.01 (5.20)<.0001
Worry85.25 (19.89)47.72 (19.32)37.52 (4.64)<.000141.14 (5.93)<.000148.32 (6.26)<.0001
Family functioning70.96 (19.68)57.23 (21.45)13.73 (4.85).006114.56 (6.16).021330.63 (6.74)<.0001
 Daily activities69.23 (21.04)49.74 (19.32)19.48 (6.44).003821.21 (7.91).009441.38 (10.50).0002
 Family relationships72.69 (20.89)62.53 (20.72)10.15 (4.92).042910.01 (6.28).116321.75 (6.73).0021
Total score77.65 (14.79)58.36 (18.03)19.29 (3.86)<.000120.71 (4.86)<.000131.26 (5.59)<.0001

Note: (SD) for unaffected and BTHS; propensity score matching with inverse probability of treatment weighting (PS-IPTW); standard error (SE). aIndependent-samples -test between the unaffected and BTHS groups. bMultiple regression model controlling for the demographic characteristics listed in Table 1. cAfter applying propensity score matching with inverse probability of treatment weighting, all demographics were balanced between the unaffected and BTHS groups.