https://orcid.org/0000-0001-9302-3225
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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.
Acknowledgements
The authors acknowledge the participants for their involvement in the survey. No funding was received for this study.
Author contributions
All authors were involved in the planning of the survey, the development of the survey instrument and the completion and approval of the final paper. DJO undertook the analysis of the results and prepared the draft paper, which was seen and commented on by all authors before submission.
Disclosure statement
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.