Cynthia Gagnon1, Jean Mathieu, Luc Noreau. 1. Centre de réadaptation en déficience physique de Jonquière, 2230 de l'Hôpital, CP 1200, Jonquière, Quebec, Canada. cynthia5_gagnon@uqac.ca
Abstract
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.
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.
Authors: Bryan P Fitzgerald; Kelly M Conn; Joanne Smith; Andrew Walker; Amy L Parkhill; James E Hilbert; Elizabeth A Luebbe; Richard T Moxley Journal: J Neurol Date: 2016-10-12 Impact factor: 4.849
Authors: Libby Wood; Isabell Cordts; Antonio Atalaia; Chiara Marini-Bettolo; Paul Maddison; Margaret Phillips; Mark Roberts; Mark Rogers; Simon Hammans; Volker Straub; Richard Petty; Richard Orrell; Darren G Monckton; Nikoletta Nikolenko; Aura Cecilia Jimenez-Moreno; Rachel Thompson; David Hilton-Jones; Chris Turner; Hanns Lochmüller Journal: J Neurol Date: 2017-04-10 Impact factor: 4.849