Abstract
Background: Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative condition that negatively effects multiple domains of functioning including movement, speech, swallow, cognition and behaviour. The clinical phenotype is variable, and 70% of patients die within 3 years of their first symptom 1,2 . While there are no effective disease modifying therapies, access to centralised multidisciplinary care improves outcomes, quality of life, and is cost effective. There is evidence that the benefit of this care model is mediated through patient centric care with complex decision-making on site during the clinic visit and involving multiple disciplines 3-6
Who is it for?This work is targeted at those interested in multidisciplinary healthcare working. It aims to further interrogate and optimise multidisciplinary care, and to support provision of a model of best practice which includes digital technologies.
Who did you involve and engage with? The study was codesigned by experts from health care, computer science, and social science. The study is part of MIRANDA, a Health Research Board funded patient-centred research programme focussed on multidisciplinary innovation and research to support patients, caregivers, and health care professionals involved in neurological care.
What did you do? Data were collected as part of an audit by direct observation of a multidisciplinary motor neurone disease clinic.
Results: A social network analysis 7 will present a map of information exchanges between disciplines in the clinic. The content of these information exchanges will be analysed using content analysis and a description of information exchanged between disciplines in the clinic will be presented.
What is the learning for the international audience? We present an approach to studying health care models that can examine the flow of information between team members. This is useful for understanding how a care model can facilitate optimised exchange of information between health care professionals for improved health services.
What are the next steps? To undertake a more in-depth analysis of the clinic from multiple perspectives, and to generate a model that facilitates information exchange. A description of this model will inform appropriate digitally enabled solutions.
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2.Goldstein LH, Abrahams S. Changes in cognition and behaviour in amyotrophic lateral sclerosis: nature of impairment and implications for assessment. The Lancet Neurology 2013;12(4):368-380. DOI: 10.1016/S1474-4422(13)70026-7.
3.Rooney J, et al. A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland. Journal of Neurology, Neurosurgery & Psychiatry 2015;86(5):496-501.
4.Traynor B, et al. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996–2000. Journal of Neurology, Neurosurgery & Psychiatry 2003;74(9):1258-1261.
5.Berg JPVd, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005;65(8):1264-1267. DOI: 10.1212/01.wnl.0000180717.29273.12.
6.de Almeida FEO, do Carmo Santana AK, de Carvalho FO. Multidisciplinary care in Amyotrophic Lateral Sclerosis: a systematic review and meta-analysis. Neurological Sciences 2021;42(3):911-923. DOI: 10.1007/s10072-020-05011-2.
7.Butts CT. Social network analysis: A methodological introduction. Asian Journal of Social Psychology 2008;11(1):13-41. DOI: https://doi.org/10.1111/j.1467-839X.2007.00241.x.