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Health profile of a cohort of adults with Duchenne muscular dystrophy
Author(s) -
Pandya Shree,
James Katherine A.,
Westfield Christina,
Thomas Shiny,
Fox Deborah J.,
Ciafaloni Emma,
Moxley Richard T.
Publication year - 2018
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.26129
Subject(s) - duchenne muscular dystrophy , medicine , cohort , muscular dystrophy , population , neuromuscular disease , young adult , pediatrics , gerontology , cohort study , physical therapy , disease , environmental health
: As the Duchenne muscular dystrophy (DMD) population ages, it is essential that we understand the late‐stage health profile and provide the appropriate care for this emerging population. Methods : We undertook a descriptive study to document the health profile of a cohort of adults with DMD using data from the Muscular Dystrophy Surveillance Tracking and Research network (MD STAR net ). Data included information collected from Arizona, Colorado, Iowa, Georgia, and 12 counties in western New York on individuals born since January 1982 and followed through December 2012. Results : In 208 adults with DMD, the number of individuals ( N ) and median ages (years) at which certain critical milestones were crossed and interventions initiated were as follows: development of cardiomyopathy, N = 145 (16.7); initiation of non‐invasive ventilation, N = 99 (18.0); gastrostomy, N = 47 (19.0); and death, N = 59 (21.8). Discussion : These population‐based data provide critical information about late‐stage health profiles among adults with DMD for developing appropriate models of care. Muscle Nerve 58 : 219–223, 2018