The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.

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.
Competing Interests: 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).
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