Chouinard Maud-Christine, Gagnon Cynthia, Laberge Luc, Tremblay Carmen, Côté Charlotte, Leclerc Nadine, Mathieu Jean
Université du Québec a Chicoutimi, Québec, Canada.
Rehabil Nurs. 2009 May-Jun;34(3):118-26. doi: 10.1002/j.2048-7940.2009.tb00266.x.
Neuromuscular hereditary disorders require long-term multidisciplinary rehabilitation management. Although the need for coordinated healthcare management has long been recognized, most neuromuscular disorders are still lacking clinical guidelines about their long-term management and structured evaluation plan with associated services. One of the most prevalent adult-onset neuromuscular disorders, myotonic dystrophy type 1, generally presents several comorbidities and a variable clinical picture, making management a constant challenge. This article presents a healthcare follow-up plan and proposes a nursing case management within a disease management program as an innovative and promising approach. This disease management program and model consists of eight components including population identification processes, evidence-based practice guidelines, collaborative practice, patient self-management education, and process outcomes evaluation (Disease Management Association of America, 2004). It is believed to have the potential to significantly improve healthcare management for neuromuscular hereditary disorders and will prove useful to nurses delivering and organizing services for this population.
神经肌肉遗传性疾病需要长期的多学科康复管理。尽管长期以来人们已经认识到协调医疗管理的必要性，但大多数神经肌肉疾病仍然缺乏关于其长期管理的临床指南以及具有相关服务的结构化评估计划。成人期最常见的神经肌肉疾病之一，1型强直性肌营养不良，通常会出现几种合并症和多变的临床表现，这使得管理成为一项持续的挑战。本文提出了一项医疗随访计划，并建议在疾病管理项目中实施护理个案管理，作为一种创新且有前景的方法。这个疾病管理项目和模式由八个部分组成，包括人群识别流程、循证实践指南、协作实践、患者自我管理教育以及流程结果评估（美国疾病管理协会，2004年）。人们认为它有潜力显著改善神经肌肉遗传性疾病的医疗管理，并且对为这一人群提供和组织服务的护士将证明是有用的。
