Date Presented 03/21/24
This study applied a propensity score-matching method to improve methodological rigor in examining the psychometric properties of the PedsQL Family Impact Module with parents of children with congenital muscular dystrophy in OT.
Primary Author and Speaker: Yoonjeong Lim
Additional Authors and Speakers: Ickpyo Hong, Areum Han
PURPOSE: Congenital muscular dystrophy (CMD) is a rare, heterogeneous neuromuscular disorder exhibiting hypotonia and muscle weakness at birth or in infancy. This study examined the preliminary reliability and validity of the PesdQL Family Impact Module (PedsQL FIM) in families of children with CMD.
DESIGN: Twenty-eight parents of children with CMD (CMD group) and 39 parents of typically developing children (control group) participated in this cross-sectional study.
METHOD: Both groups of parents completed the PedsQL FIM, which measures parental health-related quality of life (HRQoL) and family functioning, and a demographic information form. Internal consistency reliability was calculated with Cronbach’s alpha. Construct validity was examined by estimating the mean score differences of the PedsQL FIM between the two groups. Three different models were used, including an unadjusted model, a multivariate regression model, and propensity score matching with inverse probability of treatment weighting.
RESULTS: Cronbach’s alpha coefficients were greater than 0.70 for all scales supporting the internal consistency reliability of the PedsQL FIM. In construct validity, the mean differences of the PedsQL FIM between the two groups were significantly different (p < .05), indicating that the instrument distinguished between the CMD and control groups. The PedsQL FIM was inversely related to the Impact of Family Scale in the CMD group.
CONCLUSIONS: The results of this study provided evidence for good preliminary reliability and validity of the PedsQL FIM in measuring parental health-related quality of life and family functioning of children with CMD.
IMPACT STATEMENT: Measuring family impact using a reliable and valid instrument, the PedsQL FIM, will help better understand the impact of raising children with CMD on families. It will also provide crucial information for occupational practitioners to implement holistic and comprehensive healthcare services for families.
References
Varni, J. W., Sherman, S. A., Burwinkle, T. M., Dickinson, P. E., & Dixon, P. (2004). The PedsQL Family Impact Module: Preliminary reliability and validity. Health and Quality of Life Outcomes, 2, 55. https://doi.org/10.1186/1477-7525-2-55
Lim. (2023). Impact of raising children with rare diseases on parental quality of life and family functioning. International Journal of Rare Disease and Disorders, 6(1), 1-6. https://doi.org/10.23937/2643-4571/1710053
Rosenbaum, P. R., & Rubin, D. B. (1984). Reducing bias in observational studies using subclassification on the propensity score. Journal of the American Statistical Association, 79(387), 516-524.
