Janssens Astrid I W A, Ruytings Marijke, Al-Chalabi Ammar, Chio Adriano, Hardiman Orla, Mcdermott Christopher J, Meyer Thomas, Mora Gabriele, Van Damme Philip, Van Den Berg Leonard H, Vanhaecht Kris, Winkler Andrea S, Sermeus Walter
a KU Leuven Institute for Healthcare Policy, Department of Public Health and Primary Care , University of Leuven - KU Leuven , Leuven, Belgium ;
b KU Leuven Institute for Healthcare Policy, Department of Public Health and Primary Care, University of Leuven- KU Leuven, Leuven, Belgium ;
Amyotroph Lateral Scler Frontotemporal Degener. 2016 Jul-Aug;17(5-6):325-36. doi: 10.3109/21678421.2016.1167911. Epub 2016 Apr 14.
Management of ALS is suboptimal. Consequently, quality improvement interventions are needed to improve ALS care. An evidence-based insight into how patients should be managed is essential when developing quality improvement interventions. Therefore, this study aimed to map, categorize and summarize international guidance on the management and care of ALS and to identify gaps in this guidance by means of a mapping review. Literature was searched for clinical practice guidelines, quality indicators and evidence-based clinical summaries. A content analysis and meta-synthesis of the included literature was performed. Interventions and outcomes used in the management and care of ALS were identified and categorized. Furthermore, the amount of guidance underpinning these interventions and outcomes was analysed. Six clinical practice guidelines, one set of quality indicators and three evidence-based clinical summaries were identified. The results demonstrated that certain domains in ALS care, mainly disease-specific domains such as breathing and swallowing, are extensively addressed in the literature whereas other subjects, such as care coordination, receive little attention. In conclusion, this mapping review provides a scientific basis for targeting and developing the clinical content of a quality improvement intervention for the management of ALS.
肌萎缩侧索硬化症（ALS）的管理并不理想。因此，需要采取质量改进干预措施来改善ALS护理。在制定质量改进干预措施时，基于证据深入了解患者应如何管理至关重要。因此，本研究旨在梳理、分类和总结关于ALS管理与护理的国际指南，并通过映射综述确定该指南中的差距。检索文献以查找临床实践指南、质量指标和基于证据的临床总结。对纳入文献进行了内容分析和元综合。确定并分类了ALS管理与护理中使用的干预措施和结果。此外，还分析了支持这些干预措施和结果的指南数量。共识别出六项临床实践指南、一组质量指标和三项基于证据的临床总结。结果表明，ALS护理中的某些领域，主要是特定疾病领域，如呼吸和吞咽，在文献中得到了广泛讨论，而其他主题，如护理协调，则很少受到关注。总之，本映射综述为针对和制定ALS管理质量改进干预措施的临床内容提供了科学依据。
