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The involvement of palliative care with neurology – a comparison of UK, Switzerland and Italy

Oliver, David J., Baker, Idris, Borasio, Gian Domenico, Cras, Patrick, Faull, Christina, Hepgul, Nilay, Lorenzi, Stefan, Stockdale, Claire, de Visser, Marianne, Vanopdenbosch, Ludo, and others. (2023) The involvement of palliative care with neurology – a comparison of UK, Switzerland and Italy. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 24 (3-4). pp. 256-262. ISSN 2167-9223. (doi:10.1080/21678421.2022.2136993) (KAR id:98637)


Objectives: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. Methods: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. Results: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. Conclusions: Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.

Item Type: Article
DOI/Identification number: 10.1080/21678421.2022.2136993
Uncontrolled keywords: Palliative care; amyotrophic lateral sclerosis; neuroloy; early referral; multidisciplinary team care; quality of life
Subjects: R Medicine
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Tizard
Funders: University of Kent (
SWORD Depositor: JISC Publications Router
Depositing User: JISC Publications Router
Date Deposited: 05 Dec 2022 12:15 UTC
Last Modified: 25 Aug 2023 13:53 UTC
Resource URI: (The current URI for this page, for reference purposes)

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