关于脊柱囊筋肌肉缩的临床护理的最佳实践建议
Kerri L Schellenberg1, Gudrun Caspar-Bell2, Colin Ellis2
1Division of Neurology (Schellenberg, Newton), Division of Endocrinology (Caspar-Bell), Division of Respirology, Critical Care, and Sleep Medicine (Ellis), Department of Medicine; Pewaseskwan Indigenous Health and Wellness (A. King, M. King); Department of Medicine (A. King), Community Health and Epidemiology (M. King), Physical Medicine and Rehabilitation (Kushneriuk, Wunder); Division of Cardiology, Department of Medicine (Lavoie); Department of Family Medicine (McGonigle), University of Saskatchewan, Saskatoon, Sask.; Division of Neurology, Department of Medicine (Johnston), University of Alberta, Edmonton, Alta.; Department of Clinical Neurosciences (Korngut, Pfeffer), University of Calgary, Calgary, Alta.; Dalhousie Medicine New Brunswick (O'Connell), Fredericton, NB; Division of Neurology, London Health Sciences Centre (Shoesmith), Western University, London, Ont.; Departments of Medicine (Neurology) and Medical Genetics (Suchowersky), University of Alberta, Edmonton, Alta.; Department of Medicine (Neurology), Ottawa Neuromuscular Centre (Warman-Chardon), University of Ottawa, Ottawa, Ont. kerri.schellenberg@usask.ca.
本指南提供了41条关于管理脊柱囊筋肌肉缩 (SBMA) 的建议,重点是为土著人口提供标准化,文化适当的护理,并改善生活质量.
科学领域:
- 神经学 神经学
- 遗传学 是一个遗传学.
- 公共卫生 公共卫生
背景情况:
- 脊柱囊筋肌缩 (SBMA) 是一种罕见的X关联神经肌肉疾病,在加拿大西部的第一民族和梅蒂人中流行率很高.
- 现有的SBMA护理缺乏标准化,需要更新指南.
研究的目的:
- 为SBMA患者的护理制定全面和标准化的指导方针.
- 提高SBMA受影响者的意识和改善生活质量.
主要方法:
- 一个跨学科的工作组进行了需求评估和文献审查.
- 使用ADAPTE框架和AGREE II工具来调整现有指南.
- 原住民社区的参与是指南制定过程中不可或缺的组成部分.
主要成果:
- 制定了41条建议,涵盖诊断,多学科护理,症状管理以及针对女性携带者的具体考虑.
- 建议涉及运动和非运动表现,包括心脏,呼吸和代谢问题.
- 该指南强调对土著人口的文化响应性护理.
结论:
- SBMA 需要多学科的管理来解决其多样化的运动和非运动症状.
- 对于SBMA的土著人来说,文化敏感的护理是必不可少的.
- 该指南旨在规范护理,提高患者的生活质量.
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