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Lancet Neurol. 2018 May;17(5):445-455. doi: 10.1016/S1474-4422(18)30026-7. Epub 2018 Feb 2.

Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan.

Author information

1
Department of Pediatrics, MetroHealth Medical Center, Case Western Reserve University, Cleveland, OH, USA. Electronic address: dbirnkrant@metrohealth.org.
2
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK.
3
RTI International, Research Triangle Park, NC, USA.
4
Department of Rehabilitation Medicine, Seattle Children's Hospital, Seattle, WA, USA.
5
Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.
6
Department of Pediatrics, Nationwide Children's Hospital, The Ohio State University, Columbus, OH, USA.
7
Rare Disorders and Health Outcomes Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA; Oak Ridge Institute for Science and Education, Oak Ridge, TN, USA.
8
Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
9
Emergency Department, University of California San Francisco Benioff Children's Hospital, Oakland, CA, USA.
10
Baylor College of Medicine, Houston, TX, USA.
11
Rare Disorders and Health Outcomes Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA.
12
Stead Family Department of Pediatrics, University of Iowa, Iowa City, IA, USA.
13
Division of Endocrinology and Diabetes, Golisano Children's Hospital, University of Rochester Medical Center, Rochester, NY, USA.
14
Division of Endocrinology and Metabolism, Children's Hospital of Eastern Ontario, and University of Ottawa, Ottawa, ON, Canada.

Abstract

Improvements in the function, quality of life, and longevity of patients with Duchenne muscular dystrophy (DMD) have been achieved through a multidisciplinary approach to management across a range of health-care specialties. In part 3 of this update of the DMD care considerations, we focus on primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Many primary care and emergency medicine clinicians are inexperienced at managing the complications of DMD. We provide a guide to the acute and chronic medical conditions that these first-line providers are likely to encounter. With prolonged survival, individuals with DMD face a unique set of challenges related to psychosocial issues and transitions of care. We discuss assessments and interventions that are designed to improve mental health and independence, functionality, and quality of life in critical domains of living, including health care, education, employment, interpersonal relationships, and intimacy.

PMID:
29398641
PMCID:
PMC5902408
DOI:
10.1016/S1474-4422(18)30026-7
[Indexed for MEDLINE]
Free PMC Article

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