The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis

David J Berlowitz^{1

2

3

4}, Susan Mathers^{5

6}, Karen Hutchinson^{7

8}, Anne Hogden⁹, Kate A Carey^{1

2}, Marnie Graco^{1

2}, Brooke-Mai Whelan¹⁰, Salma Charania¹¹, Frederik Steyn¹², Peter Allcroft^{13

14}, Ashley Crook^{15

16}, Nicole L Sheers^{1

2}

Affiliations

¹ The University of Melbourne, Parkville, Australia.
² Institute for Breathing and Sleep, Heidelberg, Australia.
³ Department of Physiotherapy, Austin Health, Heidelberg, Australia.
⁴ Department of Respiratory and Sleep Medicine, Austin Health, Heidelberg, Australia.
⁵ Calvary Health Care Bethlehem, Caulfield South, Australia.
⁶ School of Clinical Sciences, Monash University, Clayton, Australia.
⁷ Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.
⁸ Central Coast Local Health District, Gosford, Australia.
⁹ School of Population Health, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
¹⁰ School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
¹¹ Motor Neurone Disease Association of Queensland, Oxley, Australia.
¹² School of Biomedical Sciences, Faculty of Medicine, The University of Queensland, Brisbane, Australia.
¹³ Southern Adelaide Palliative Services, Flinders Medical Centre, Bedford Park, Australia.
¹⁴ College of Medicine and Public Health, Flinders University, Bedford Park, Australia.
¹⁵ Graduate School of Health, University of Technology Sydney, Chippendale, Australia.
¹⁶ Centre for MND Research and Department of Clinical Medicine, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, Australia.

PMID: 37830099
PMCID: PMC10567075
DOI: 10.1183/20734735.0269-2022

Review

The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis

David J Berlowitz et al. Breathe (Sheff). 2023 Sep.

. 2023 Sep;19(3):220269.

doi: 10.1183/20734735.0269-2022. Epub 2023 Oct 10.

Authors

Affiliations

¹ The University of Melbourne, Parkville, Australia.
² Institute for Breathing and Sleep, Heidelberg, Australia.
³ Department of Physiotherapy, Austin Health, Heidelberg, Australia.
⁴ Department of Respiratory and Sleep Medicine, Austin Health, Heidelberg, Australia.
⁵ Calvary Health Care Bethlehem, Caulfield South, Australia.
⁶ School of Clinical Sciences, Monash University, Clayton, Australia.
⁷ Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.
⁸ Central Coast Local Health District, Gosford, Australia.
⁹ School of Population Health, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
¹⁰ School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
¹¹ Motor Neurone Disease Association of Queensland, Oxley, Australia.
¹² School of Biomedical Sciences, Faculty of Medicine, The University of Queensland, Brisbane, Australia.
¹³ Southern Adelaide Palliative Services, Flinders Medical Centre, Bedford Park, Australia.
¹⁴ College of Medicine and Public Health, Flinders University, Bedford Park, Australia.
¹⁵ Graduate School of Health, University of Technology Sydney, Chippendale, Australia.
¹⁶ Centre for MND Research and Department of Clinical Medicine, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, Australia.

PMID: 37830099
PMCID: PMC10567075
DOI: 10.1183/20734735.0269-2022

Abstract

Motor neurone disease/amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, where death is usually secondary to progressive respiratory failure. Assisting people with ALS through their disease journey is complex and supported by clinics that provide comprehensive multidisciplinary care (MDC). This review aims to apply both a respiratory and a complexity lens to the key roles and areas of practice within the MDC model in ALS. Models of noninvasive ventilation care, and considerations in the provision of palliative therapy, respiratory support, and speech and language therapy are discussed. The impact on people living with ALS of both inequitable funding models and the complexity of clinical care decisions are illustrated using case vignettes. Considerations of the impact of emerging antisense and gene modifying therapies on MDC challenges are also highlighted. The review seeks to illustrate how MDC members contribute to collective decision-making in ALS, how the sum of the parts is greater than any individual care component or health professional, and that the MDC per se adds value to the person living with ALS. Through this approach we hope to support clinicians to navigate the space between what are minimum, guideline-driven, standards of care and what excellent, person-centred ALS care that fully embraces complexity could be.

Educational aims: To highlight the complexities surrounding respiratory care in ALS.To alert clinicians to the risk that complexity of ALS care may modify the effectiveness of any specific, evidence-based therapy for ALS.To describe the importance of person-centred care and shared decision-making in optimising care in ALS.

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Conflict of interest statement

Conflict of interest: D.J. Berlowitz received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. D.J. Berlowitz has previously received competitive grant funding from Motor Neurone Disease Research Australia and the Medical Research Future Fund for unconnected work. S. Mathers received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. S. Mathers has previously received competitive grant funding from Motor Neurone Disease Research Australia, Fight MND and NHMRC for unconnected work. K. Hutchinson received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. A. Hogden received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. K.A. Carey received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. M. Graco received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. M. Graco has previously received competitive grant funding from Motor Neurone Disease Research Australia (MND Research Post-Doctoral Fellowship). B-M. Whelan received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. B-M. Whelan has previously received competitive grant funding from Motor Neurone Disease Research Australia for unconnected work (project grant funding). S. Charania received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. S. Charania has previously received a competitive scholarship from The Prince Charles Hospital for unconnected work (PhD funding in the area of Motor Neurone Disease). F. Steyn received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. F. Steyn has previously received competitive grant funding for unconnected work (project grant funding). This includes industry-funding for preclinical testing of compounds for the treatment of ALS. P. Allcroft received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. A. Crook received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. A. Crook has previously received competitive grant funding from Motor Neurone Disease Research Australia and the University of Technology Sydney for unconnected work (project funding and funding towards conference attendance). N.L. Sheers received no financial support for this work and reports no financial or personal conflicts of interest connected or unconnected with this work. N.L. Sheers has previously received competitive grant funding from Motor Neurone Disease Research Australia for unconnected work (project grant funding and funding towards conference attendance).

Figures

**FIGURE 1**
Noninvasive ventilation (NIV) pathway model. Reproduced and modified from [24] with permission.

**FIGURE 2**
Examples of the models of care that may be associated with stages of the noninvasive ventilation (NIV) pathway. This figure illustrates the multiple entry points and models of care for respiratory assessment, NIV initiation/acclimatisation, optimisation, monitoring, and end-of-life care. ALS: amyotrophic lateral sclerosis; MDT: multidisciplinary team.

See this image and copyright information in PMC

Comment in

doi: 10.1183/20734735.0147-2023

References

1. National Institute for Health and Care Excellence . Motor neurone disease: assessment and management. NICE guideline NG42. Date last updated: 23 July 2019. https://www.nice.org.uk/guidance/ng42 - PubMed
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The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis

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The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis

Authors

Affiliations

Abstract

Conflict of interest statement

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