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dc.contributor.authorAndrews, Jennifer G
dc.contributor.authorPandya, Shree
dc.contributor.authorTrout, Christina
dc.contributor.authorJaff, Treeva
dc.contributor.authorMatthews, Dennis
dc.contributor.authorCunniff, Christopher
dc.contributor.authorMeaney, F John
dc.date.accessioned2019-08-05T19:59:13Z
dc.date.available2019-08-05T19:59:13Z
dc.date.issued2019-03-27
dc.identifier.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/10.1177/2050312119840518en_US
dc.identifier.issn2050-3121
dc.identifier.pmid30944724
dc.identifier.doi10.1177/2050312119840518
dc.identifier.urihttp://hdl.handle.net/10150/633662
dc.description.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.en_US
dc.description.sponsorshipCenters for Disease Control and Prevention [DD000187, DD000189, DD000190, DD000191]en_US
dc.language.isoenen_US
dc.publisherSAGE PUBLICATIONS INCen_US
dc.rights© The Author(s) 2019.en_US
dc.rights.urihttp://rightsstatements.org/vocab/InC/1.0/
dc.subjectBecker muscular dystrophyen_US
dc.subjectDuchenne muscular dystrophyen_US
dc.subjectcaregiver surveyen_US
dc.subjectpalliative care useen_US
dc.subjectservice utilizationen_US
dc.titlePalliative care services in families of males with muscular dystrophy: Data from MD STARneten_US
dc.typeArticleen_US
dc.contributor.departmentUniv Arizona, Dept Pediaten_US
dc.identifier.journalSAGE OPEN MEDICINEen_US
dc.description.noteOpen access journalen_US
dc.description.collectioninformationThis 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 repository@u.library.arizona.edu.en_US
dc.eprint.versionFinal published versionen_US
dc.source.journaltitleSAGE open medicine
refterms.dateFOA2019-08-05T19:59:14Z


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