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Title:

Palliative care services in families of males with Duchenne muscular dystrophy

Author(s):

Arias R, Andrews J, Pandya S, Pettit K, Trout C, Apkon S, Karwoski J, Cunniff C, Matthews D, Miller T, Davis MF, Meaney FJ

Year:

2011

Publication Info:

Muscle & Nerve, 44(1):93-101

Abstract:

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.

Link to Article:

http://www.ncbi.nlm.nih.gov/pubmed/21674523

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