Baxter, S. orcid.org/0000-0002-6034-5495, Johnson, M. orcid.org/0000-0003-0850-234X, Clowes, M. orcid.org/0000-0002-5582-9946 et al. (7 more authors) (2019) Optimizing the noninvasive ventilation pathway for patients with amyotrophic lateral sclerosis/motor neuron disease: a systematic review. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 20 (7-8). pp. 461-472. ISSN 2167-8421
Abstract
Objective: To systematically review quantitative and qualitative literature on optimal provision of noninvasive ventilation (NIV) for patients with amyotrophic lateral sclerosis/motor neuron disease (MND). Methods: A systematic search of electronic databases, together with supplementary search methods was used to identify relevant literature from the last 20 years. Studies of any empirical design with an English abstract were eligible for inclusion. Data from documents meeting our criteria were extracted and synthesized using narrative and thematic synthesis. A patient pathway of care model was used to integrate data and provide a process perspective to the findings. Results: While the importance of individualizing care was highlighted, factors optimizing use for all patients include: specialized multi-disciplinary team service provision; determining need using respiratory function tests in addition to symptom report; providing adequate information for patients and their family; paying attention to the role of carers in decision-making; adequately managing secretions; considering the most advantageous place of initiation; optimizing the interface, machine mode, and settings for patient comfort and effectiveness; providing supportive interventions where appropriate; regular monitoring and adjustment of settings; and providing opportunities for ongoing discussion of patient wishes. Conclusions: Optimizing use of NIV in people with MND requires consideration of multiple factors as part of a process throughout the patient pathway. Current guidelines predominantly focus on the initiation of NIV and may underplay psychosocial factors. We have made evidence-based recommendations for each step in the pathway, which may help improve optimal uptake, usage, quality of life, and survival outcomes in patients with MND.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2019 World Federation of Neurology on behalf of the Research Group on Motor Neuron Diseases. This is an author-produced version of a paper subsequently published in Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | Motor neuron disease; amyotrophic lateral sclerosis; noninvasive ventilation; systematic review; respiratory failure |
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 > Faculty of Science (Sheffield) > Department of Psychology (Sheffield) The University of Sheffield > Sheffield Teaching Hospitals |
Funding Information: | Funder Grant number NATIONAL INSTITUTE FOR HEALTH RESEARCH PR-PG-1216-20041 |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 01 Jul 2019 11:16 |
Last Modified: | 07 Dec 2021 10:43 |
Status: | Published |
Publisher: | Taylor & Francis |
Refereed: | Yes |
Identification Number: | 10.1080/21678421.2019.1627372 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:147403 |