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

Lucy S Musson; Susan K Baxter; Paul Norman; David O'Brien; Mark Elliott; Stephen Bianchi; Georgios Kaltsakas; Christopher J McDermott; Theocharis Stavroulakis; Esther V Hobson

doi:10.1183/23120541.00388-2022

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

ERJ Open Res. 2023 Mar 27;9(2):00388-2022. doi: 10.1183/23120541.00388-2022. eCollection 2023 Mar.

Authors

Lucy S Musson¹, Susan K Baxter², Paul Norman³, David O'Brien⁴, Mark Elliott⁵, Stephen Bianchi⁶, Georgios Kaltsakas^{7

8}, Christopher J McDermott^{1

6

9}, Theocharis Stavroulakis^{1

9}, Esther V Hobson^{1

6

9}

Affiliations

¹ Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK.
² School of Health and Related Research, University of Sheffield, Sheffield, UK.
³ Department of Psychology, University of Sheffield, Sheffield, UK.
⁴ Medical School, University of Sheffield, Sheffield, UK.
⁵ Leeds Teaching Hospitals NHS Trust, Leeds, UK.
⁶ Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
⁷ Lane Fox Respiratory Service, Guy's and St Thomas' NHS Foundation Trust, London, UK.
⁸ Centre for Human and Applied Physiological Sciences (CHAPS), King's College London, London, UK.
⁹ These authors contributed equally to this work.

Abstract

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.