Neurology Reference Group - Palliative Care
This neurology reference group aims to build on the work of the EAPC Task Force on Neurology which facilitated the publication of the EAN / EAPC Consensus document in the European Journal of Neurology and draft a curriculum for training for neurologists and palliative care specialists.
There are close links with the Palliative Care Scientific Panel of the European Academy of Neurology and a Memorandum of Understanding has been agreed between the two organisations. There is agreement to look at further collaboration, sessions in Congresses and potential research collaborations.
The aims and objectives of the Group are:
1. Collaboration with the European Academy of Neurology
2. Development of curriculum for neurologists and palliative care specialists
3. Development of education and sessions at each other’s Congresses
4. Development of research in palliative care in neurology across Europe
5. Collaboration with the World Federation of Neurology
6. Collaboration with the International Neuro-Palliative Care Society
Professor Gian D Borasio, Lausanne, Switzerland
Professor Stefan Lorenzl, Salzburg, Austria
Dr Simone Veronese, FARO, Turin, Italy
Professor Raymond Voltz, Cologne, Germany
Christoph Ostgathe, Germany – EAPC Board link
Plans for the years 2020/2021
- Development of a Core curriculum on palliative care for neurologists and neurology for palliative care specialists, working with the UEMS (European Union of Medical Specialists)
- Congress sessions at the Virtual EAN Congress in 2021 and the World Congress of Neurology in Rome 2021
- A European wide research project looking at the collaboration in the care of people with MND/ ALS. This has been completed and posters have been submitted for the EAN and EAPC Congresses
- This survey is open from September to November 2021 at https://www.smartsurvey.co.uk/s/NNK7YZ/
- Developing educational resources for palliative care and neurology
- Collaborating with the
- European Academy of Neurology Scientific Panel on palliative care
- World Federation of Neurology
- The newly formed International Neuro-palliative Care Society in the USA
Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016;23: 30-38. doi:10.1111/ene.12889
Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. Palliative care in chronic and progressive neurological disease: summary of a consensus view. Eur J Pall Care 2016; 23: 232-235.
Alessandra Solari, Andrea Giordano, Jaume Sastre-Garriga, Sascha Köpke, Anne C. Rahn, Ingo Kleiter, Katina Aleksovska, Mario A. Battaglia, Jette Bay, Massimiliano Copetti, Jelena Drulovic, Liesbeth Kooij, John Mens, Edwin R. Meza Murillo, Ivan Milanov, Ron Milo, Tatiana Pekmezovic, Janine Vosburgh, Eli Silber, Simone Veronese, Francesco Patti, Raymond Voltz, David J. Oliver, and on behalf of the Guideline Task Force. EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis. Journal of Palliative Medicine. ahead of print http://doi.org/10.1089/jpm.2020.0220
A.Solari , A. Giordanoa, J. Sastre-Garriga , S. Kopke, A. C. Rahn , I. Kleiter , K. Aleksovska , M. A. Battaglia , J. Bay , M. Copetti , J. Drulovic , L. Kooij , J. Mens , E. R. Meza Murillo, I. Milanov, R. Milo, T. Pekmezovic , J. Vosburgh , E. Silber , S. Veronese , F. Patti , R. Voltz, D. Oliver and on behalf of the guideline task force. EAN guideline on palliative care of people with severe, progressive multiple sclerosis. European Journal of Neurology 2020, 0: 1–20 Doi: http://dx.doi.org/10.1111/ene.14248
Oliver D, Borasio GD, Veronese S, Voltz R, Lorenzl S, Hepgul N. Current collaboration between palliative care and neurology: a survey of clinicians in Europe. BMJ Supp Pall Care. 2020 https://spcare.bmj.com/content/early/2020/07/09/bmjspcare-2020-002322
PD_PAL is a consortium of 10 partners funded by the EU within the H2020 framework.
The project aims to integrate palliative care with traditional care and suggest a new model of palliative care focused on the patient’s quality of life along the entire course of disease. PD_Pal wants to provide an added layer of support to patients with Parkinson’s disease, their loved ones, and treating clinicians by investigating the effect of novel approaches to late stage of the disease, which focus on increased involvement of Parkinson’s disease nurses. The project aims to promote multidisciplinary care and education, which will facilitate a tailored and specific management of each patient, removing the barriers that prevent neurologists from appropriately referring patients to specialized palliative care services and hospices.
The project aims to increase awareness, development and research in palliative care and advance care planning, involving everyone who is involved in the care of people with Parkinson’s disease. This includes creating guidelines and recommendations to guide the need and timing of clinical and hospice referrals and to define the role of the specialists and the multidisciplinary palliative care team members – including a new PD_Pal tool kit.
The Principal Investigators involved, and co-leading the project, are Pille Taba, Anette Schrag, Bas Bloem, Stefan Lorenzl, Ray Chauduri, Carsten Eggers, Spyridon Konitsiotis.
Links: PD_PAL project https://www.pdpal.eu/
PD_PAL tool kit https://www.pdpal.eu/courses.