Concordance between parental and self-rated and performance-based measures of executive functioning in boys with Duchenne muscular dystrophy: the role of parental life satisfaction and carrier versus non-carrier status.

The aim of this study was to examine the concordance between parental and self-rated and performance-based tests of executive function in boys with Duchenne muscular dystrophy (DMD). A secondary aim was to explore how this concordance is related to parents' self-rated life satisfaction and status as a carrier mother versus non-carrier mother. In a cross-sectional study design, 70 boys with DMD, aged 5-14, and their parents were included. Results indicated no significant correlation between performance-based measures and parental or self-rated assessments of executive function (EF). However, parents with low life satisfaction and/or carrier status rated their child's EF skills significantly lower. But self-rated life satisfaction did not correlate with status as a carrier mother or the performance-based measures of the boys' and the boys' performance-based EF skills did not correlate with either their parents' life satisfaction or status as a carrier mother. These findings indicate that the two sources of information may not measure the same construct. One possible explanation for this is that our data supports the framework of hot and cold executive function (EF) skills and that these EF skills must be identified using different methods. Another possible explanation could be that parental ratings of child EF skills may also include measurement of carrier burden, parents EF skills, and the families' abilities for psychosocial adjustments in everyday life.