A Pilot Survey Study of Adherence to Care Considerations for Duchenne Muscular Dystrophy
| Autor: | Kristin M Conway, Christina Trout, Christina Westfield, Shree Pandya, Deborah J. Fox |
|---|---|
| Rok vydání: | 2018 |
| Předmět: |
medicine.medical_specialty
business.industry Duchenne muscular dystrophy media_common.quotation_subject Pilot survey MEDLINE Medicine (miscellaneous) medicine.disease Pulmonary function testing 03 medical and health sciences 0302 clinical medicine Empirical research Promotion (rank) 030225 pediatrics Family medicine medicine Muscular dystrophy business Psychosocial 030217 neurology & neurosurgery media_common |
| Zdroj: | PLoS Currents. |
| ISSN: | 2157-3999 |
| DOI: | 10.1371/currents.md.5f533e6e60ee172d6bf6b2b8375dfadf |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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