Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy

Abstract Purpose This study examines the preliminary reliability and validity of the PedsQL™ Family Impact Module (PedsQL™ FIM) in parents of children with congenital muscular dystrophy (CMD). Methods The participants in this study were 28 parents of children with CMD and 39 parents of unaffected ch...

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Main Authors: Yoonjeong Lim, Seungmin Lee, Ickpyo Hong, Areum Han
Format: Article
Language:English
Published: Springer 2024-11-01
Series:Journal of Rare Diseases
Subjects:
Online Access:https://doi.org/10.1007/s44162-024-00057-8
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author Yoonjeong Lim
Seungmin Lee
Ickpyo Hong
Areum Han
author_facet Yoonjeong Lim
Seungmin Lee
Ickpyo Hong
Areum Han
author_sort Yoonjeong Lim
collection DOAJ
description Abstract Purpose This study examines the preliminary reliability and validity of the PedsQL™ Family Impact Module (PedsQL™ FIM) in parents of children with congenital muscular dystrophy (CMD). Methods The participants in this study were 28 parents of children with CMD and 39 parents of unaffected children. Both groups of parents completed the PedsQL™ FIM and a demographic information form. Cronbach’s alpha was used to examine the internal consistency reliability, and the known-groups method was used to assess construct validity. Three distinct models were used to estimate the mean score differences of the PedsQL™ FIM between the two groups: an unadjusted model, a multivariate regression model, and propensity score matching with inverse probability of treatment weighting. Results Cronbach’s alpha coefficients for all scales exceeded 0.70, supporting evidence for the internal consistency reliability of the PedsQL™ FIM. The construct validity of the PedsQL™ FIM demonstrated that the mean differences between the CMD and unaffected groups were significantly different (p < .05). This indicated that the instrument could discriminate between the two groups. Conclusions The results of this study demonstrated the good preliminary reliability and validity of the PedsQL™ FIM in assessing parental health-related quality of life and family functioning of children with CMD.
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spelling doaj-art-cb11574fd06e4448b3942fcb3703362e2025-08-20T02:18:35ZengSpringerJournal of Rare Diseases2731-085X2024-11-01311710.1007/s44162-024-00057-8Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophyYoonjeong Lim0Seungmin Lee1Ickpyo Hong2Areum Han3Division of Occupational Therapy, Decker College of Nursing and Health Sciences, Binghamton UniversityDepartment of Kinesiology, College of Health and Human Sciences, Iowa State UniversityDepartment of Occupational Therapy, College of Software and Digital Healthcare Convergence, Yonsei UniversityDepartment of Occupational Therapy, University of Alabama at BirminghamAbstract Purpose This study examines the preliminary reliability and validity of the PedsQL™ Family Impact Module (PedsQL™ FIM) in parents of children with congenital muscular dystrophy (CMD). Methods The participants in this study were 28 parents of children with CMD and 39 parents of unaffected children. Both groups of parents completed the PedsQL™ FIM and a demographic information form. Cronbach’s alpha was used to examine the internal consistency reliability, and the known-groups method was used to assess construct validity. Three distinct models were used to estimate the mean score differences of the PedsQL™ FIM between the two groups: an unadjusted model, a multivariate regression model, and propensity score matching with inverse probability of treatment weighting. Results Cronbach’s alpha coefficients for all scales exceeded 0.70, supporting evidence for the internal consistency reliability of the PedsQL™ FIM. The construct validity of the PedsQL™ FIM demonstrated that the mean differences between the CMD and unaffected groups were significantly different (p < .05). This indicated that the instrument could discriminate between the two groups. Conclusions The results of this study demonstrated the good preliminary reliability and validity of the PedsQL™ FIM in assessing parental health-related quality of life and family functioning of children with CMD.https://doi.org/10.1007/s44162-024-00057-8Congenital muscular dystrophyConstruct validityInternal consistency reliabilityPedsQL™ Family Impact ModulePropensity score
spellingShingle Yoonjeong Lim
Seungmin Lee
Ickpyo Hong
Areum Han
Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy
Journal of Rare Diseases
Congenital muscular dystrophy
Construct validity
Internal consistency reliability
PedsQL™ Family Impact Module
Propensity score
title Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy
title_full Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy
title_fullStr Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy
title_full_unstemmed Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy
title_short Preliminary reliability and validity of the PedsQL™ Family Impact Module in parents of children with congenital muscular dystrophy
title_sort preliminary reliability and validity of the pedsql™ family impact module in parents of children with congenital muscular dystrophy
topic Congenital muscular dystrophy
Construct validity
Internal consistency reliability
PedsQL™ Family Impact Module
Propensity score
url https://doi.org/10.1007/s44162-024-00057-8
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AT ickpyohong preliminaryreliabilityandvalidityofthepedsqlfamilyimpactmoduleinparentsofchildrenwithcongenitalmusculardystrophy
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