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A Pilot Survey Study of Adherence to Care Considerations for Duchenne Muscular Dystrophy
Journal article   Open access

A Pilot Survey Study of Adherence to Care Considerations for Duchenne Muscular Dystrophy

Kristin Conway, Christina Trout, Christina Westfield, Deborah Fox and Shree Pandya
PLoS currents, Vol.10
05/11/2018
DOI: 10.1371/currents.md.5f533e6e60ee172d6bf6b2b8375dfadf
PMCID: PMC6128678
PMID: 30254788
url
https://doi.org/10.1371/currents.md.5f533e6e60ee172d6bf6b2b8375dfadfView
Published (Version of record) Open Access

Abstract

Introduction Care Considerations supported by the Centers for Disease Control and Prevention for the management of Duchenne muscular dystrophy were published in 2010, but there has been limited study of implementation in the United States. Methods A questionnaire collecting information about standard care practices and perceived barriers was piloted by 9 clinic directors of facilities within the Muscular Dystrophy Surveillance, Tracking and Research network. Results Six clinic directors completed the questionnaire; 1 adult-only clinic was excluded. Over 80% adherence was found for 30 of 55 recommendations examined. Greatest variability was for initiation of corticosteroids, bone health monitoring, type of pulmonary function testing, and psychosocial management. Barriers included unclear guidelines, inadequate time and funding, family-specific barriers and lack of empirical support for some recommendations. Discussion This pilot study showed implementation of the 2010 Care Considerations, except for recommendations based largely on expert consensus. Complete adherence requires more studies and active promotion.
 Muscular Dystrophy

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