Life habits in myotonic dystrophy type 1
Cynthia Gagnon, Jean Mathieu and Luc Noreau
Objective: To describe and compare life habits between individuals with adult and mild phenotypes of myotonic dystrophy; identify life habit dimensions in which accomplishment is compromised; and describe satisfaction related to life habits.
Design: Cross-sectional study.
Subjects: A random sample of 200 subjects with myotonic dystrophy (42 mild phenotypes, 158 adult phenotypes).
Measurement: The Assessment of Life Habits (LIFE-H), a questionnaire assessing self-perceived life habits (activities and participation as described in the International Classification of Functioning, Disability and Health (ICF)).
Results: Participants with the adult phenotype demonstrated significantly lower participation levels than those with the mild phenotype on 8 out of the 11 categories of the LIFE-H. Lower levels of accomplishment were reported in Mobility, Housing, Fitness, Nutrition, Personal Care, Employment, Recreation, and Community Life categories among the adult phenotype. The Recreation category was the most affected, with 4 out of 7 items revealing compromised accomplishment among 22–27% of individuals. The lowest satisfaction score was observed in the Employment and Recreation categories. In all categories, individuals with the adult phenotype displayed significantly lower satisfaction levels than those with the mild phenotype.
Conclusion: This study helped to establish a clearer distinction between activities and participation levels of individuals with the mild phenotype and those with the adult phenotype and supported tailored rehabilitation and community services to improve accomplishment of life habits.
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