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Delivery of noninvasive ventilation to people living with motor neuron disease in the UK

OBJECTIVE: Noninvasive 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) leve...

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Autores principales: Musson, Lucy S., Baxter, Susan K., Norman, Paul, O'Brien, David, Elliott, Mark, Bianchi, Stephen, Kaltsakas, Georgios, McDermott, Christopher J., Stavroulakis, Theocharis, Hobson, Esther V.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: European Respiratory Society 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10052642/
https://www.ncbi.nlm.nih.gov/pubmed/37009026
http://dx.doi.org/10.1183/23120541.00388-2022
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author Musson, Lucy S.
Baxter, Susan K.
Norman, Paul
O'Brien, David
Elliott, Mark
Bianchi, Stephen
Kaltsakas, Georgios
McDermott, Christopher J.
Stavroulakis, Theocharis
Hobson, Esther V.
author_facet Musson, Lucy S.
Baxter, Susan K.
Norman, Paul
O'Brien, David
Elliott, Mark
Bianchi, Stephen
Kaltsakas, Georgios
McDermott, Christopher J.
Stavroulakis, Theocharis
Hobson, Esther V.
author_sort Musson, Lucy S.
collection PubMed
description OBJECTIVE: Noninvasive 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.
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spelling pubmed-100526422023-03-30 Delivery of noninvasive ventilation to people living with motor neuron disease in the UK Musson, Lucy S. Baxter, Susan K. Norman, Paul O'Brien, David Elliott, Mark Bianchi, Stephen Kaltsakas, Georgios McDermott, Christopher J. Stavroulakis, Theocharis Hobson, Esther V. ERJ Open Res Original Research Articles OBJECTIVE: Noninvasive 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. European Respiratory Society 2023-03-27 /pmc/articles/PMC10052642/ /pubmed/37009026 http://dx.doi.org/10.1183/23120541.00388-2022 Text en Copyright ©The authors 2023 https://creativecommons.org/licenses/by-nc/4.0/This version is distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0. For commercial reproduction rights and permissions contact permissions@ersnet.org (mailto:permissions@ersnet.org)
spellingShingle Original Research Articles
Musson, Lucy S.
Baxter, Susan K.
Norman, Paul
O'Brien, David
Elliott, Mark
Bianchi, Stephen
Kaltsakas, Georgios
McDermott, Christopher J.
Stavroulakis, Theocharis
Hobson, Esther V.
Delivery of noninvasive ventilation to people living with motor neuron disease in the UK
title Delivery of noninvasive ventilation to people living with motor neuron disease in the UK
title_full Delivery of noninvasive ventilation to people living with motor neuron disease in the UK
title_fullStr Delivery of noninvasive ventilation to people living with motor neuron disease in the UK
title_full_unstemmed Delivery of noninvasive ventilation to people living with motor neuron disease in the UK
title_short Delivery of noninvasive ventilation to people living with motor neuron disease in the UK
title_sort delivery of noninvasive ventilation to people living with motor neuron disease in the uk
topic Original Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10052642/
https://www.ncbi.nlm.nih.gov/pubmed/37009026
http://dx.doi.org/10.1183/23120541.00388-2022
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