1 40 2 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1016/S1474-4422(09)70271-6" target="_blank" rel="noreferrer">http://doi.org/10.1016/S1474-4422(09)70271-6</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management Publisher An entity responsible for making the resource available Lancet Neurology Date A point or period of time associated with an event in the lifecycle of the resource 2010 Subject The topic of the resource Female; Humans; Male; Diagnosis; Differential; Duchenne/diagnosis/genetics/therapy; Glucocorticoids/administration & dosage/adverse effects/therapeutic use; Muscular Dystrophy Creator An entity primarily responsible for making the resource Bushby K; Finkel R; Birnkrant DJ; Case LE; Clemens PR; Cripe L; Kaul A; Kinnett K; McDonald C; Pandya S; Poysky J; Shapiro F; Tomezsko J; Constantin C; DMD Care Considerations Working Group Description An account of the resource Duchenne muscular dystrophy (DMD) is a severe, progressive disease that affects 1 in 3600-6000 live male births. Although guidelines are available for various aspects of DMD, comprehensive clinical care recommendations do not exist. The US Centers for Disease Control and Prevention selected 84 clinicians to develop care recommendations using the RAND Corporation-University of California Los Angeles Appropriateness Method. The DMD Care Considerations Working Group evaluated assessments and interventions used in the management of diagnostics, gastroenterology and nutrition, rehabilitation, and neuromuscular, psychosocial, cardiovascular, respiratory, orthopaedic, and surgical aspects of DMD. These recommendations, presented in two parts, are intended for the wide range of practitioners who care for individuals with DMD. They provide a framework for recognising the multisystem primary manifestations and secondary complications of DMD and for providing coordinated multidisciplinary care. In part 1 of this Review, we describe the methods used to generate the recommendations, and the overall perspective on care, pharmacological treatment, and psychosocial management. 2010 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/S1474-4422(09)70271-6" target="_blank" rel="noreferrer">10.1016/S1474-4422(09)70271-6</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2010 Backlog Birnkrant DJ Bushby K Case LE Clemens PR Constantin C Cripe L Diagnosis Differential DMD Care Considerations Working Group Duchenne/diagnosis/genetics/therapy Female Finkel R Glucocorticoids/administration & dosage/adverse effects/therapeutic use Humans Journal Article Kaul A Kinnett K Lancet Neurology Male McDonald C Muscular Dystrophy Pandya S Poysky J Shapiro F Tomezsko J Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1002/mus.22005" target="_blank" rel="noreferrer">http://doi.org/10.1002/mus.22005</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Palliative care services in families of males with Duchenne muscular dystrophy Publisher An entity responsible for making the resource available Muscle & Nerve Date A point or period of time associated with an event in the lifecycle of the resource 2011 Creator An entity primarily responsible for making the resource Arias R; Andrews J; Pandya S; Pettit K; Trout C; Apkon S; Karwoski J; Cunniff C; Matthews D; Miller T; Davis MF; Meaney FJ Description An account of the resource INTRODUCTION: Palliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD). METHODS: The objective of this study was to describe the palliative care services that families of males with DMD report they receive. A questionnaire was administered to families of males with DMD born prior to January 1, 1982. Thirty-four families responded. RESULTS: Most families (85%) had never heard the term palliative care. Only attendant care and skilled nursing services showed much usage, with 44% and 50% indicating receipt of these services, respectively. Receipt of other services was reported less frequently: pastoral care (27%); respite care (18%); pain management (12%); and hospice care (6%). Only 8 respondents (25%) reported having any type of directive document in place. CONCLUSION: The data suggest a need for improved awareness of palliative care and related services among families of young men with DMD. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/mus.22005" target="_blank" rel="noreferrer">10.1002/mus.22005</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2011 Andrews J Apkon S Arias R Backlog Cunniff C Davis MF Journal Article Karwoski J Matthews D Meaney FJ Miller T Muscle & Nerve Pandya S Pettit K Trout C