Article

While most studies of Duchenne muscular dystrophy (DMD) have focused on
physical impairment, there is a need to explore how impairment impacts real-life
experiences in order to provide intervention strategies focused on participation.
Objectives were: (1) to investigate the domains of participation in a sample of
boys with DMD; (2) to compare a younger (<10 years) and older (>/=10 years) group
of boys with DMD with regard to participation; (3) to investigate strength and
timed functional tests in a sample of boys with DMD; (4) to compare a younger
(<10 years) and older (>/=10 years) group of boys with DMD with regard to
strength and timed functional tests; and (5) to explore associations between
participation and strength and timed functional tests for our DMD cohorts.
METHODS: This cross-sectional study included 60 boys with DMD (mean 9.3 years +/-
0.3). Boys completed strength testing, timed functional tests, the Children's
Assessment of Participation and Enjoyment and the ACTIVLIM. Independent samples
t-tests were used to test for differences in all measures between our younger and
older cohorts; Spearman's (rank) correlation was used to assess relationships
between participation and strength and time functional tests. RESULTS:
Significant differences were found between our younger and older boys with DMD in
the areas of recreational (p < 0.01), social (p < 0.001), and skill-based
activities (p < 0.05), as well as with whom and where the activities were
performed (p < 0.05 and 0.001, respectively). Older boys with DMD report lower
levels of participation in these areas, as well as less engagement in activities
with individuals other than family members and less participation outside of the
home. Lower levels of strength and slower rates of functional performance
correlate with participation in fewer physical activities for our younger cohort
and fewer physical and social activities for our older cohort. CONCLUSIONS:
Strength and function relate to the variability and type of activities in which
boys with DMD participate. A key finding is the significant decline in social
activities and community-based engagement as the boys with DMD age. The ultimate
goal of an intervention is for our children to be as actively engaged in life as
they desire. This requires addressing participation when measuring outcomes in
order to more fully understand limitations and provide appropriate strategies for
continued participation for boys and their families. IMPLICATIONS FOR
REHABILITATION: Duchenne muscular dystrophy is a devastating progressive
neuromuscular disorder that leads to significant strength and functional
limitations, which affect physical and social participation for these boys. The
ability to move beyond clinically-based outcomes and assess and monitor a child's
daily activities through participation measures may provide information for
therapeutic interventions. Rehabilitation specialists have a role as advocates
for social and community engagement for children with physical limitations.
Providing families with information on community-based opportunities, and the
strategies and environmental modifications available may increase social
participation for our youth growing up with a neuromuscular disorder.

Langue : ANGLAIS