Palliative care services in families of males with muscular dystrophy: Data from MD STARnet
AuthorAndrews, Jennifer G
Meaney, F John
AffiliationUniv Arizona, Dept Pediat
KeywordsBecker muscular dystrophy
Duchenne muscular dystrophy
palliative care use
MetadataShow full item record
PublisherSAGE PUBLICATIONS INC
CitationAndrews, J. G., Pandya, S., Trout, C., Jaff, T., Matthews, D., Cunniff, C., & Meaney, F. J. (2019). Palliative care services in families of males with muscular dystrophy: Data from MD STARnet. SAGE Open Medicine. https://doi.org/10.1177/2050312119840518
JournalSAGE OPEN MEDICINE
Rights© The Author(s) 2019 Article reuse guidelines: sagepub.com/journals-permissions
Collection InformationThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at email@example.com.
AbstractIntroduction: Information on use of palliative care services among individuals with Duchenne and Becker muscular dystrophy is scant despite the clearly documented need. Methods: We examined associations between uptake of palliative care services by 233 males with Duchenne and Becker muscular dystrophy aged 12 and older for both caregiver and affected male characteristics using the Muscular Dystrophy Surveillance Tracking and Research Network baseline interview. Results: Ninety-one percent of caregivers (213/233) used at least one palliative care service. Case management had the highest frequency of use (59%). Use of palliative care was more frequently associated with the characteristics of affected males, as were some individual palliative care services. Utilization of six individual services differed among Muscular Dystrophy Surveillance Tracking and Research Network sites. While research suggests that pain is a frequent problem in Duchenne and Becker muscular dystrophy, only 12.5% reported use of pain management services. Discussion: Although palliative care use among families of males with Duchenne and Becker muscular dystrophy is high overall, there is much variability in use of individual services. Use of palliative care is driven by disease experience in the affected male. Many of the care recommendations for these individuals highlight the importance for early involvement of palliative care professionals.
NoteOpen access journal
VersionFinal published version
SponsorsCenters for Disease Control and Prevention [DD000187, DD000189, DD000190, DD000191]
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