Department of Pediatrics, MetroHealth Medical Center, Case Western Reserve University, Cleveland, OH, USA.
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK.
Lancet Neurol. 2018 May;17(5):445-455. doi: 10.1016/S1474-4422(18)30026-7. Epub 2018 Feb 2.
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.
通过多学科方法管理一系列医疗保健专业,改善了杜氏肌营养不良症(DMD)患者的功能、生活质量和寿命。在本更新的 DMD 护理注意事项的第 3 部分中,我们专注于初级保健、紧急管理、社会心理护理以及整个生命周期的护理过渡。许多初级保健和急诊医学临床医生在处理 DMD 并发症方面经验不足。我们提供了一份指南,介绍了这些一线提供者可能遇到的急性和慢性医疗状况。随着生存时间的延长,患有 DMD 的个体面临着与社会心理问题和护理过渡相关的独特挑战。我们讨论了旨在改善心理健康和独立性、功能以及包括医疗保健、教育、就业、人际关系和亲密关系在内的关键生活领域的生活质量的评估和干预措施。