School of Health and Related Research (ScHARR), The University of Sheffield, Sheffield, UK.
Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Clin Nutr ESPEN. 2022 Jun;49:328-340. doi: 10.1016/j.clnesp.2022.03.026. Epub 2022 Mar 21.
BACKGROUND & AIMS: Poor nutritional outcomes are observed in people with Amyotrophic Lateral Sclerosis (pwALS) including weight loss and poor dietary intake. Surveys of healthcare professionals have highlighted the lack of evidence and knowledge regarding nutritional management of ALS throughout the disease course. Furthermore, national evidence-based guidance is lacking. This mapping review aims to understand the structure and input of nutritional management services for pwALS.
Systematic searches were conducted across eight electronic databases to identify qualitative and quantitative research on structure and input of nutritional care in ALS. Supplementary searches included grey literature, citation and reference list searching of included studies and key reviews, web searching and contacting experts and organisations that provide ALS services to identify guidelines. Study selection and data extraction were undertaken independently by at least two reviewers. Data was synthesised using a narrative approach.
One hundred and nine documents were identified. These consisted of journal articles, guidelines and related documents that contributed evidence towards mapping of nutritional management of pwALS. No evidence on commissioning of nutritional care was identified. Guidelines provided high-level overviews and gave general guidance or recommendations for care; however, these typically focused on gastrostomy with limited guidance on broader aspects, including oral nutrition support. Evidence from primary studies found nutritional care delivery in ALS consisted of multiple types of nutritional management, at different time points during the disease course and involving a range of professionals. There was little evidence relating to proactive nutritional care. Details of healthcare setting, number of professionals involved in care, team composition and how services were delivered in community settings were sparse. Although the role of the speech and language therapist in swallowing assessment and provision of advice on the management of swallowing difficulties was consistent; there was limited evidence on care provided by dietitians. In addition, a small number of studies reported on the use of screening tools. Overall, evidence was consistent that weight management, including monitoring of weight change by professionals and patients, was central and recommended that this should be part of nutritional assessment and follow-up.
The evidence identified in this mapping review has highlighted the requirement for further primary research providing specific details on how nutritional management of pwALS is structured and delivered.
肌萎缩侧索硬化症（pwALS）患者的营养状况较差，包括体重减轻和饮食摄入不良。对医疗保健专业人员的调查强调了在整个疾病过程中缺乏有关 ALS 营养管理的证据和知识。此外，缺乏国家循证指南。本映射综述旨在了解 pwALS 的营养管理服务的结构和投入。
系统检索了八个电子数据库，以确定有关 ALS 中营养护理结构和投入的定性和定量研究。补充搜索包括灰色文献、纳入研究和关键综述的引文和参考文献搜索、网络搜索以及联系提供 ALS 服务的专家和组织以确定指南。至少由两名审查员独立进行研究选择和数据提取。使用叙述方法对数据进行综合。
确定了 109 份文件。这些文件包括期刊文章、指南和相关文件，这些文件为 pwALS 的营养管理映射提供了证据。没有发现有关营养护理委托的证据。指南提供了高级概述，并为护理提供了一般指导或建议；然而，这些通常侧重于胃造口术，对更广泛的方面，包括口服营养支持的指导有限。来自主要研究的证据发现，ALS 中的营养护理包括在疾病过程的不同时间点进行的多种类型的营养管理，涉及一系列专业人员。关于主动营养护理的证据很少。有关医疗保健环境的详细信息、参与护理的专业人员数量、团队组成以及在社区环境中提供服务的方式都很少。尽管言语治疗师在吞咽评估和提供吞咽困难管理建议方面的作用是一致的；但关于营养师提供的护理的证据有限。此外，一些研究报告了使用筛查工具的情况。总的来说，有证据表明，体重管理包括专业人员和患者监测体重变化，这是中心的，并建议这应成为营养评估和随访的一部分。
本映射综述中确定的证据强调了进一步开展初级研究的必要性，以提供有关 pwALS 的营养管理结构和提供方式的具体细节。
