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Title: The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.
Austin Authors: Berlowitz, David J ;Mathers, Susan;Hutchinson, Karen;Hogden, Anne;Carey, Kate A;Graco, Marnie ;Whelan, Brooke-Mai;Charania, Salma;Steyn, Frederik;Allcroft, Peter;Crook, Ashley;Sheers, Nicole L
Affiliation: Institute for Breathing and Sleep
Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.;Central Coast Local Health District, Gosford, Australia.
School of Population Health, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
Motor Neurone Disease Association of Queensland, Oxley, Australia.
School of Biomedical Sciences, Faculty of Medicine, The University of Queensland, Brisbane, Australia.
Southern Adelaide Palliative Services, Flinders Medical Centre, Bedford Park, Australia.;College of Medicine and Public Health, Flinders University, Bedford Park, Australia.
Graduate School of Health, University of Technology Sydney, Chippendale, Australia.;Centre for MND Research and Department of Clinical Medicine, Faculty of Medicine, Health and Human Sciences, Macquarie University, Sydney, Australia.
Respiratory and Sleep Medicine
Issue Date: Sep-2023
Date: 2023
Publication information: Breathe (Sheffield, England) 2023-09; 19(3)
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. 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.
DOI: 10.1183/20734735.0269-2022
ORCID: 0000-0003-2543-8722
Journal: Breathe (Sheffield, England)
Start page: 220269
PubMed URL: 37830099
Type: Journal Article
Appears in Collections:Journal articles

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