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

被引:297
作者
Birnkrant, David J. [1 ]
Bushby, Katharine [2 ]
Bann, Carla M. [3 ]
Apkon, Susan D. [4 ]
Blackwell, Angela [3 ]
Colvin, Mary K. [5 ,6 ]
Cripe, Linda [7 ]
Herron, Adrienne R. [8 ,9 ]
Kennedy, Annie [10 ]
Kinnett, Kathi [10 ]
Naprawa, James [11 ]
Noritz, Garey [7 ]
Poysky, James [12 ]
Street, Natalie [8 ]
Trout, Christina J. [13 ]
Weber, David R. [14 ]
Ward, Leanne A. [15 ,16 ]
机构
[1] Case Western Reserve Univ, Dept Pediat, MetroHealth Med Ctr, Cleveland, OH 44109 USA
[2] Newcastle Univ, Inst Genet Med, John Walton Muscular Dystrophy, Newcastle Upon Tyne, Tyne & Wear, England
[3] RTI Int, Res Triangle Pk, NC USA
[4] Seattle Childrens Hosp, Dept Rehabil Med, Seattle, WA USA
[5] Massachusetts Gen Hosp, Boston, MA 02114 USA
[6] Harvard Med Sch, Boston, MA USA
[7] Ohio State Univ, Nationwide Childrens Hosp, Dept Pediat, Columbus, OH 43210 USA
[8] Ctr Dis Control & Prevent, Rare Disorders & Hlth OutcomesTeam, Natl Ctr Birth Defects & Dev Disabil, Atlanta, GA USA
[9] Oak Ridge Inst Sci & Educ, Oak Ridge, TN USA
[10] Parent Project Muscular Dystrophy, Hackensack, NJ USA
[11] Univ Calif Oakland, San Francisco Benioff Childrens Hosp, Emergency Dept, Oakland, CA USA
[12] Baylor Coll Med, Houston, TX USA
[13] Univ Iowa, Stead Family Dept Pediat, Iowa City, IA USA
[14] Univ Rochester, Med Ctr, Div Endocrinol & Diabet, Golisano Childrens Hosp, Rochester, NY 14642 USA
[15] Childrens Hosp Eastern Ontario, Div Endocrinol & Metab, Ottawa, ON, Canada
[16] Univ Ottawa, Ottawa, ON, Canada
关键词
DEFICIT HYPERACTIVITY DISORDER; HEALTH-CARE; YOUNG-ADULTS; NEUROPSYCHOLOGICAL PROFILE; MEDICAL HOME; MALES; NEEDS; QUESTIONNAIRE; MEN; NETHERLANDS;
D O I
10.1016/S1474-4422(18)30026-7
中图分类号
R74 [神经病学与精神病学];
学科分类号
100204 [神经病学];
摘要
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.
引用
收藏
页码:445 / 455
页数:11
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