Psychosocial Management of the Patient With Duchenne Muscular Dystrophy

In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, t...

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Vydáno v:Pediatrics (Evanston) Ročník 142; číslo Suppl 2; s. S99
Hlavní autoři: Colvin, Mary K, Poysky, James, Kinnett, Kathi, Damiani, Mario, Gibbons, Melissa, Hoskin, Janet, Moreland, Scott, Trout, Christina J, Weidner, Norbert
Médium: Journal Article
Jazyk:angličtina
Vydáno: United States 01.10.2018
ISSN:1098-4275, 1098-4275
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Abstract In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now standard practice to integrate psychosocial management into the multidisciplinary management of the disease. It is also increasingly recognized that neurodevelopmental disorders in DMD occur at a higher rate than what was previously understood and that these disorders warrant early and intensive intervention. In this article, we expand on the content found in the 2018 DMD Care Considerations.
AbstractList In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now standard practice to integrate psychosocial management into the multidisciplinary management of the disease. It is also increasingly recognized that neurodevelopmental disorders in DMD occur at a higher rate than what was previously understood and that these disorders warrant early and intensive intervention. In this article, we expand on the content found in the 2018 DMD Care Considerations.In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now standard practice to integrate psychosocial management into the multidisciplinary management of the disease. It is also increasingly recognized that neurodevelopmental disorders in DMD occur at a higher rate than what was previously understood and that these disorders warrant early and intensive intervention. In this article, we expand on the content found in the 2018 DMD Care Considerations.
In this article, we outline a comprehensive plan for the psychosocial management of patients with Duchenne muscular dystrophy (DMD) across the life span. In 2010, the Centers for Disease Control and Prevention sponsored the development of multidisciplinary management guidance for DMD, and in 2018, that guidance was updated. In the intervening years, a new emphasis was placed on studying and addressing the psychosocial issues that affect patients with DMD, driven in part by improved patient survival. Once viewed as ancillary to managing the significant medical needs of patients with DMD, it is now standard practice to integrate psychosocial management into the multidisciplinary management of the disease. It is also increasingly recognized that neurodevelopmental disorders in DMD occur at a higher rate than what was previously understood and that these disorders warrant early and intensive intervention. In this article, we expand on the content found in the 2018 DMD Care Considerations.
Author Hoskin, Janet
Damiani, Mario
Kinnett, Kathi
Gibbons, Melissa
Trout, Christina J
Moreland, Scott
Weidner, Norbert
Poysky, James
Colvin, Mary K
Author_xml – sequence: 1
  givenname: Mary K
  surname: Colvin
  fullname: Colvin, Mary K
  email: mcolvin@mgh.harvard.edu
  organization: Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts; mcolvin@mgh.harvard.edu
– sequence: 2
  givenname: James
  surname: Poysky
  fullname: Poysky, James
  organization: Baylor College of Medicine, Houston, Texas
– sequence: 3
  givenname: Kathi
  surname: Kinnett
  fullname: Kinnett, Kathi
  organization: Parent Project Muscular Dystrophy, Hackensack, New Jersey
– sequence: 4
  givenname: Mario
  surname: Damiani
  fullname: Damiani, Mario
  organization: Parent Project Muscular Dystrophy, Hackensack, New Jersey
– sequence: 5
  givenname: Melissa
  surname: Gibbons
  fullname: Gibbons, Melissa
  organization: Children's Hospital Colorado, Aurora, Colorado
– sequence: 6
  givenname: Janet
  surname: Hoskin
  fullname: Hoskin, Janet
  organization: University of East London, London, United Kingdom
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  givenname: Scott
  surname: Moreland
  fullname: Moreland, Scott
  organization: Baylor College of Medicine, Houston, Texas
– sequence: 8
  givenname: Christina J
  surname: Trout
  fullname: Trout, Christina J
  organization: University of Iowa, Iowa City, Iowa; and
– sequence: 9
  givenname: Norbert
  surname: Weidner
  fullname: Weidner, Norbert
  organization: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
BackLink https://www.ncbi.nlm.nih.gov/pubmed/30275254$$D View this record in MEDLINE/PubMed
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