• Rebeca Arias, Jennifer Andrews, Shree Pandya, Kathleen Pettit, Christina Trout, Susan Apkon, Jane Karwoski, Christopher Cunniff, Dennis Matthews, Timothy Miller, Melinda F Davis, and F John Meaney.
• Department of Pediatrics and the Steele Research Center, University of Arizona, 1501 North Campbell Avenue, P.O. Box 245073, Tucson, Arizona 85724, USA.
• Muscle Nerve. 2011 Jul 1; 44 (1): 93-101.

IntroductionPalliative care services that address physical pain and emotional, psychosocial, and spiritual needs may benefit individuals with Duchenne muscular dystrophy (DMD).MethodsThe 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.ResultsMost 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.ConclusionThe data suggest a need for improved awareness of palliative care and related services among families of young men with DMD.Copyright © 2011 Wiley Periodicals, Inc.

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