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

Oliver, David ORCID: 0000-0001-9302-3225, Baker, Idris, Borasio, Gian Domenico, Cras, Patrick, Faull, Christina, Hepgul, Nilay, Lorenzl, Stefan, Stockdale, Claire, de Visser, Marianne, Vanopdenbosch, Ludo, Voltz, Raymond and Veronese, Simone ORCID: 0000-0002-9555-7252 . The involvement of palliative care with neurology - a comparison of UK, Switzerland and Italy. Amyotroph. Lateral Scher. Frontotemp. Degenerat.. ABINGDON: TAYLOR & FRANCIS LTD. ISSN 2167-9223

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DOI:10.1080/21678421.2022.2136993

Abstract

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:

Journal Article

Creators:

Creators	Email	ORCID	ORCID Put Code
Oliver, David	UNSPECIFIED	orcid.org/0000-0001-9302-3225	UNSPECIFIED
Baker, Idris	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Borasio, Gian Domenico	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Cras, Patrick	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Faull, Christina	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Hepgul, Nilay	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Lorenzl, Stefan	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Stockdale, Claire	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
de Visser, Marianne	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Vanopdenbosch, Ludo	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Voltz, Raymond	UNSPECIFIED	UNSPECIFIED	UNSPECIFIED
Veronese, Simone	UNSPECIFIED	orcid.org/0000-0002-9555-7252	UNSPECIFIED