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.
Yoonjeong Lim, Ickpyo Hong, Areum Han
PMID 38187035WHAT IT FOUND
The PedsQL Family Impact Module reliably distinguishes parents of children with Barth syndrome from others, showing significantly lower family functioning scores in the Barth syndrome group.
One subscale on communication was less reliable, so interpret those specific scores with caution.
Key findings
01The PedsQL Family Impact Module showed strong internal consistency for most scales, distinguishing between parents of children with Barth syndrome and unaffected children.
02Parents of children with Barth syndrome had significantly lower scores for parental health-related quality of life and family functioning compared to parents of unaffected children.
03The communication scale did not meet the standard reliability threshold (Cronbach's alpha 0.56) in the Barth syndrome group, despite acceptable item-total correlations.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The sample size was small (72 parents), which may have affected the stability of results in multivariate models. Convenience sampling was used, introducing potential selection bias. The study was cross-sectional, so it could not assess test-retest reliability or changes over time. Participants were mostly white, middle-class, and highly educated, limiting generalizability to more diverse populations. The communication scale showed low internal consistency in the Barth syndrome group, reducing confidence in that specific subscale's findings.
Declared interests
No specific conflicts of interest or funding sources were detailed in the provided text, though the Barth Syndrome Foundation assisted with recruitment.
The easy way to misread this
Do not assume the PedsQL Family Impact Module is fully validated for all subscales in this population. The communication scale failed the standard reliability threshold in the Barth syndrome group, so scores on that specific subscale should not be used for clinical decision-making without further assessment.