Musson, L.S. orcid.org/0000-0002-1246-2734, Baxter, S.K., Norman, P. orcid.org/0000-0002-5892-0470 et al. (7 more authors) (2023) Delivery of non-invasive ventilation to people living with motor neuron disease in the UK. ERJ Open Research, 9 (2). 00388-2022. ISSN 2312-0541
Abstract
Objective Non-invasive ventilation (NIV) improves survival and quality of life in motor neuron disease (MND), but many patients fail to receive effective ventilation. This study aimed to map the respiratory clinical care for MND patients at a service and individual healthcare professional (HCP) level to understand where attention may be needed to ensure all patients receive optimal care.
Methods Two online surveys of HCPs working with MND patients in the UK were conducted. Survey 1 targeted HCPs providing specialist MND care. Survey 2 targeted HCPs working in respiratory/ventilation services and community teams. Data were analysed using descriptive and inferential statistics.
Results Responses from 55 HCPs providing specialist MND care who worked at 21 MND care centres and networks and 13 Scotland Health Boards were analysed from Survey 1. Responses from 85 HCPs from respiratory/ventilation services and 73 HCPs from community teams, representing 97 services were analysed from Survey 2.
Significant differences in practice were identified at each stage of the respiratory care pathway as well as evidence of the need for improvement. This included when patients were referred to respiratory services, the time taken waiting to commence NIV, the availability of sufficient NIV equipment and provision of services, particularly out of hours.
Conclusion We have highlighted significant disparity in MND respiratory care practices. Increased awareness of the factors that influence NIV success and the performance of individuals and services is important for optimal practice.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | ©The authors 2022. This version is distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0 (http://creativecommons.org/licenses/by-nc/4.0/). For commercial reproduction rights and permissions contact permissions@ersnet.org |
Keywords: | Clinical Research; Health Services; Organisation and delivery of services; Health and social care services research |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Science (Sheffield) > Department of Psychology (Sheffield) The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Department of Neuroscience (Sheffield) |
Funding Information: | Funder Grant number National Institute for Health Research PB-PG-1216-20041 |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 16 Jan 2023 11:52 |
Last Modified: | 24 Apr 2023 15:49 |
Status: | Published |
Publisher: | European Respiratory Society (ERS) |
Refereed: | Yes |
Identification Number: | 10.1183/23120541.00388-2022 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:195311 |