Psychosocial Management of the Patient With Duchenne Muscular Dystrophy

被引:33
作者
Colvin, Mary K. [1 ,2 ]
Poysky, James [3 ]
Kinnett, Kathi [4 ]
Damiani, Mario [4 ]
Gibbons, Melissa [5 ]
Hoskin, Janet [6 ]
Moreland, Scott [3 ]
Trout, Christina J. [7 ]
Weidner, Norbert [8 ]
机构
[1] Massachusetts Gen Hosp, 1 Bowdoin Sq,Suite 701, Boston, MA 02114 USA
[2] Harvard Med Sch, Boston, MA 02115 USA
[3] Baylor Coll Med, Houston, TX 77030 USA
[4] Parent Project Muscular Dystrophy, Hackensack, NJ USA
[5] Childrens Hosp Colorado, Aurora, CO USA
[6] Univ East London, London, England
[7] Univ Iowa, Iowa City, IA USA
[8] Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH 45229 USA
关键词
D O I
10.1542/peds.2018-0333L
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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.
引用
收藏
页码:S99 / S109
页数:11
相关论文
共 45 条
[1]   PALLIATIVE CARE SERVICES IN FAMILIES OF MALES WITH DUCHENNE MUSCULAR DYSTROPHY [J].
Arias, Rebeca ;
Andrews, Jennifer ;
Pandya, Shree ;
Pettit, Kathleen ;
Trout, Christina ;
Apkon, Susan ;
Karwoski, Jane ;
Cunniff, Christopher ;
Matthews, Dennis ;
Miller, Timothy ;
Davis, Melinda F. ;
Meaney, F. John .
MUSCLE & NERVE, 2011, 44 (01) :93-101
[2]   Quality of Life in Duchenne Muscular Dystrophy: The Subjective Impact on Children and Parents [J].
Baiardini, Ilaria ;
Minetti, Carlo ;
Bonifacino, Simona ;
Porcu, Anna ;
Klersy, Catherine ;
Petralia, Paolo ;
Balestracci, Sara ;
Tarchino, Filippo ;
Parodi, Stefania ;
Canonica, Giorgio Walter ;
Braido, Fulvio .
JOURNAL OF CHILD NEUROLOGY, 2011, 26 (06) :707-713
[3]   Cognitive and Neurobehavioral Profile in Boys With Duchenne Muscular Dystrophy [J].
Banihani, Rudaina ;
Smile, Sharon ;
Yoon, Grace ;
Dupuis, Annie ;
Mosleh, Maureen ;
Snider, Andrea ;
McAdam, Laura .
JOURNAL OF CHILD NEUROLOGY, 2015, 30 (11) :1472-1482
[4]   Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan [J].
Birnkrant, David J. ;
Bushby, Katharine ;
Bann, Carla M. ;
Apkon, Susan D. ;
Blackwell, Angela ;
Colvin, Mary K. ;
Cripe, Linda ;
Herron, Adrienne R. ;
Kennedy, Annie ;
Kinnett, Kathi ;
Naprawa, James ;
Noritz, Garey ;
Poysky, James ;
Street, Natalie ;
Trout, Christina J. ;
Weber, David R. ;
Ward, Leanne A. .
LANCET NEUROLOGY, 2018, 17 (05) :445-455
[5]   The Respiratory Management of Patients With Duchenne Muscular Dystrophy: A DMD Care Considerations Working Group Specialty Article [J].
Birnkrant, David J. ;
Bushby, Katharine M. D. ;
Amin, Raouf S. ;
Bach, John R. ;
Benditt, Joshua O. ;
Eagle, Michelle ;
Finder, Jonathan D. ;
Kalra, Maninder S. ;
Kissel, John T. ;
Koumbourlis, Anastassios C. ;
Kravitz, Richard M. .
PEDIATRIC PULMONOLOGY, 2010, 45 (08) :739-748
[6]   Early Neurodevelopmental Findings Predict School Age Cognitive Abilities in Duchenne Muscular Dystrophy: A Longitudinal Study [J].
Chieffo, Daniela ;
Brogna, Claudia ;
Berardinelli, Angela ;
D'Angelo, Grazia ;
Mallardi, Maria ;
D'Amico, Adele ;
Alfieri, Paolo ;
Mercuri, Eugenio ;
Pane, Marika .
PLOS ONE, 2015, 10 (08)
[7]   Neuropsychological profile of Duchenne Muscular Dystrophy [J].
Cotton, S ;
Crowe, SF ;
Voudouris, N .
CHILD NEUROPSYCHOLOGY, 1998, 4 (02) :110-117
[8]   Cognitive and adaptive deficits in young children with Duchenne muscular dystrophy (DMD) [J].
Cyrulnik, Shana E. ;
Fee, Robert J. ;
Batchelder, Abigail ;
Kiefel, Jacqueline ;
Goldstein, Edward ;
Hinton, Veronica J. .
JOURNAL OF THE INTERNATIONAL NEUROPSYCHOLOGICAL SOCIETY, 2008, 14 (05) :853-861
[9]   Depression in parents of children with Duchenne muscular dystrophy [J].
Daoud, MSA ;
Dooley, JM ;
Gordon, KE .
PEDIATRIC NEUROLOGY, 2004, 31 (01) :16-19
[10]   Timing and localization of human dystrophin isoform expression provide insights into the cognitive phenotype of Duchenne muscular dystrophy [J].
Doorenweerd, Nathalie ;
Mahfouz, Ahmed ;
van Putten, Maaike ;
Kaliyaperumal, Rajaram ;
t' Hoen, Peter A. C. ;
Hendriksen, Jos G. M. ;
Aartsma-Rus, Annemieke M. ;
Verschuuren, Jan J. G. M. ;
Niks, Erik H. ;
Reinders, Marcel J. T. ;
Kan, Hermien E. ;
Lelieveldt, Boudewijn P. F. .
SCIENTIFIC REPORTS, 2017, 7