Health profile of a cohort of adults with Duchenne muscular dystrophy

Pandya S, James KA, Westfield C, et al. Health profile of a cohort of adults with Duchenne muscular dystrophy. Muscle & nerve 2018;58:219-223

Pandya_2018_Muscle Nerve. Aug;58(2);219-223l

Information on American DMD patients born January 1982, which were followed for 20 years (till December 2012) was gathered to look at the age at which certain events take place, e.g. heart problems and the need of assisted ventilation. This data could be useful to expand knowledge about the disease in adults in order to improve care.

 

Abstract

INTRODUCTION: 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 STARnet). 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.

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