Article

This study investigated the relationship between quality of life (QoL) and
health-related quality of life (HRQoL) and assessed factors other than health
that contribute to differences in QoL in young males with Duchenne muscular
dystrophy (DMD). METHOD: In this cross-sectional study, QoL and HRQoL measures
were completed by 98 parents and 85 children. The Quality of My Life (QoML)
questionnaire measured QoL and HRQoL as single-items, and the Pediatric Quality
of Life 4.0 Generic Core (PedsQL) questionnaire was used as a multidimensional
measure of HRQoL. Simple regression was used to examine the relationship between
single-item measures of HRQoL and QoL. Multivariable regression was used to
investigate factors that may contribute to difference in QoL and HRQoL. RESULTS:
While ratings of QoL and HRQoL were significantly correlated with one another,
HRQoL only accounted for 21% and 44% of the variability in QoL by child- and
parent-reports respectively. None of the factors measured contributed ratings of
the child's QoL to be much higher than HRQoL. INTERPRETATION: QoL and HRQoL are
related but distinct constructs as rated by children with DMD and their parents.
Further research is needed to elucidate factors outside HRQoL that contribute to
QoL. WHAT THIS PAPER ADDS: Quality of life (QoL) and health-related quality of
life are distinct concepts rated by young males with Duchenne muscular dystrophy
(DMD) and their parents. Factors outside of 'health' contribute to overall QoL in
the paediatric population with DMD. This article's abstract has been translated
into Spanish and Portuguese. Follow the links from the abstract to view the
translations.
CI - (c) 2017 Mac Keith Press.

Langue : ANGLAIS