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dc.contributor.authorBerlowitz, David J-
dc.contributor.authorMathers, Susan-
dc.contributor.authorHutchinson, Karen-
dc.contributor.authorHogden, Anne-
dc.contributor.authorCarey, Kate A-
dc.contributor.authorGraco, Marnie-
dc.contributor.authorWhelan, Brooke-Mai-
dc.contributor.authorCharania, Salma-
dc.contributor.authorSteyn, Frederik-
dc.contributor.authorAllcroft, Peter-
dc.contributor.authorCrook, Ashley-
dc.contributor.authorSheers, Nicole L-
dc.identifier.citationBreathe (Sheffield, England) 2023-09; 19(3)en_US
dc.description.abstractMotor 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.en_US
dc.titleThe complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.en_US
dc.typeJournal Articleen_US
dc.identifier.journaltitleBreathe (Sheffield, England)en_US
dc.identifier.affiliationInstitute for Breathing and Sleepen_US
dc.identifier.affiliationAustralian Institute of Health Innovation, Macquarie University, Sydney, Australia.;Central Coast Local Health District, Gosford, Australia.en_US
dc.identifier.affiliationSchool of Population Health, Faculty of Medicine and Health, University of New South Wales, Sydney, Australia.en_US
dc.identifier.affiliationSchool of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.en_US
dc.identifier.affiliationMotor Neurone Disease Association of Queensland, Oxley, Australia.en_US
dc.identifier.affiliationSchool of Biomedical Sciences, Faculty of Medicine, The University of Queensland, Brisbane, Australia.en_US
dc.identifier.affiliationSouthern Adelaide Palliative Services, Flinders Medical Centre, Bedford Park, Australia.;College of Medicine and Public Health, Flinders University, Bedford Park, Australia.en_US
dc.identifier.affiliationGraduate 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.en_US
dc.identifier.affiliationRespiratory and Sleep Medicineen_US
item.openairetypeJournal Article-
item.fulltextNo Fulltext-
item.grantfulltextnone- for Breathing and Sleep- Analytics Research and Evaluation (DARE) Centre- for Breathing and Sleep-
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