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SAGE Open Med. 2019 Mar 27;7:2050312119840518. doi: 10.1177/2050312119840518. eCollection 2019.

Palliative care services in families of males with muscular dystrophy: Data from MD STARnet.

Author information

1
Department of Pediatrics, The University of Arizona, Tucson, AZ, USA.
2
Department of Neurology and School of Medicine and Dentistry, University of Rochester, Rochester, NY, USA.
3
The University of Iowa Wellstone Muscular Dystrophy Cooperative Research Center, Iowa City, IA, USA.
4
Birth Defects Registry and Surveillance Section, New York State Department of Health, Albany, NY, USA.
5
School of Medicine, University of Colorado, Denver, CO, USA.
6
Department of Pediatrics, Joan and Sanford I. Weill Medical College, Cornell University, New York, NY, USA.

Abstract

Introduction:

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.

KEYWORDS:

Becker muscular dystrophy; Duchenne muscular dystrophy; caregiver survey; palliative care use; service utilization

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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