Essat, M. orcid.org/0000-0003-2397-402X, Coates, E., Clowes, M. et al. (7 more authors)
(2022)
Understanding the current nutritional management for people with amyotrophic lateral sclerosis - a mapping review.
Clinical Nutrition ESPEN, 49.
pp. 328-340.
ISSN 2405-4577
Abstract
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.
Methods
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.
Results
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.
Conclusions
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2022 European Society for Clinical Nutrition and Metabolism. This is an author produced version of a paper subsequently published in Clinical Nutrition ESPEN. Uploaded in accordance with the publisher's self-archiving policy. Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/). |
Keywords: | Rare Diseases; Neurosciences; ALS; Neurodegenerative; Clinical Research; Brain Disorders; Nutrition; Health Services; Prevention; 8.1 Organisation and delivery of services; Oral and gastrointestinal |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research The University of Sheffield > Sheffield Teaching Hospitals |
Funding Information: | Funder Grant number National Institute for Health Research RR-PG-1016-20006 |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 30 Mar 2022 09:44 |
Last Modified: | 21 Mar 2023 01:13 |
Status: | Published |
Publisher: | Elsevier |
Refereed: | Yes |
Identification Number: | 10.1016/j.clnesp.2022.03.026 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:185261 |
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Filename: Essat_et_al_manuscript__revised_final_.pdf
Licence: CC-BY-NC-ND 4.0