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      Executive Page Dear EAN members, dear friends, It is my pleasure to give you an update on behalf of the EAN Scientific Committee following a busy year since my appointment as chair. It has been a privilege to be so deeply involved in the scientific activities of the EAN and to work closely with an amazing community of people who are so dedicated to the advancement of neurology. One of the strongest threads within that community is the EAN’s group of Scientific Panels, which are often referred to as the organisation’s ‘scientific backbone’. The panels have a hand in everything the EAN does from a scientific point of view, including coordinating clinical research, disseminating good practice, assisting in planning the EAN annual congress, supporting the EAN’s educational efforts, and producing guidelines that assist neurologists in daily practice. All of this work requires a considerable amount of oversight, and this is why each panel is run by its own Management Group, elected by the panel members. Being a part of one of these Management Groups (PDF) is an opportunity to play a direct part in determining the direction of scientific progress within Europe, and I am excited to say that the call for applications to stand for election will be announced in September. All panel members and EAN individual members are eligible to apply to be candidates, with the vote being held among the existing panel members in autumn. I would like to urge every neurologist with a passion for the scientific future of their special area of interest to consider standing for election to the relevant Management Group and to look out for the call for applications later this month. I can tell you from personal experience that fulfilling a role such as this within the structure of the EAN is a fascinating and extremely rewarding experience. The chance to take on such a unique leadership position should not be missed! The most satisfying aspect of being involved in the EAN’s organisational structure is surely seeing all the hard work and planning come to fruition when a small idea evolves into a newly launched project. One such example is the 1st EAN Science School, taking place in Salzburg next March. The idea of the Science School is to offer early career neurologists with an interest in translational research a new avenue for learning about basic pathomechanisms of neurological disorders. Application for this very first edition, on ‘Pathophysiology of disorders of the nervous system’, closed last week and we have been delighted with the level of interest. It was a pleasure to be part of the task force in charge of planning this new project and I look forward to seeing it officially transferred to the hands of the Scientific Committee after a successful event and evaluation in spring. Of our ongoing activities, one of the most significant is the EAN Neuro-covid Registry, which aims to collate epidemiological data on neurological manifestations in patients with COVID-19 infection reported by neurologists in outpatient services, emergency rooms, and hospital departments. We currently have 1,542 patients entered in the database, from 35 centres across 23 countries. So far, 29 patients have been followed for 12 months and 387 have completed the 6-months follow up. This is a decent start, but I would like to strongly encourage EAN members and their institutions to get involved and contribute cases to what will become an invaluable resource for neurologists and clinicians to improve care for Covid-19 patients. Finally, I would like share a word on a forthcoming collaboration between EAN and the Human Brain Project in December, that I think will interest a lot of EAN members. The EAN-EBRAINS joint workshop on ‘The future of medical data sharing in clinical neurosciences’ will be a three-day virtual event that aims to discuss issues and challenges associated with data sharing in Europe, from ethics to data safety and privacy, including those specific to data federation, such as the development and validation of federated algorithms. The whole workshop is completely free of charge and registration is open until 25 November, so please check out the details and sign up! I wish you all a healthy and pleasant autumn and I look forward to updating you again. Best wishes Thomas Berger Chair of the EAN Scientific Committee

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      Executive Page Dear EAN members, dear friends, It is my pleasure to give you an update on behalf of the EAN Scientific Committee following a busy year since my appointment as chair. It has been a privilege to be so deeply involved in the scientific activities of the EAN and to work closely with an amazing community of people who are so dedicated to the advancement of neurology. One of the strongest threads within that community is the EAN’s group of Scientific Panels, which are often referred to as the organisation’s ‘scientific backbone’. The panels have a hand in everything the EAN does from a scientific point of view, including coordinating clinical research, disseminating good practice, assisting in planning the EAN annual congress, supporting the EAN’s educational efforts, and producing guidelines that assist neurologists in daily practice. All of this work requires a considerable amount of oversight, and this is why each panel is run by its own Management Group, elected by the panel members. Being a part of one of these Management Groups (PDF) is an opportunity to play a direct part in determining the direction of scientific progress within Europe, and I am excited to say that the call for applications to stand for election will be announced in September. All panel members and EAN individual members are eligible to apply to be candidates, with the vote being held among the existing panel members in autumn. I would like to urge every neurologist with a passion for the scientific future of their special area of interest to consider standing for election to the relevant Management Group and to look out for the call for applications later this month. I can tell you from personal experience that fulfilling a role such as this within the structure of the EAN is a fascinating and extremely rewarding experience. The chance to take on such a unique leadership position should not be missed! The most satisfying aspect of being involved in the EAN’s organisational structure is surely seeing all the hard work and planning come to fruition when a small idea evolves into a newly launched project. One such example is the 1st EAN Science School, taking place in Salzburg next March. The idea of the Science School is to offer early career neurologists with an interest in translational research a new avenue for learning about basic pathomechanisms of neurological disorders. Application for this very first edition, on ‘Pathophysiology of disorders of the nervous system’, closed last week and we have been delighted with the level of interest. It was a pleasure to be part of the task force in charge of planning this new project and I look forward to seeing it officially transferred to the hands of the Scientific Committee after a successful event and evaluation in spring. Of our ongoing activities, one of the most significant is the EAN Neuro-covid Registry, which aims to collate epidemiological data on neurological manifestations in patients with COVID-19 infection reported by neurologists in outpatient services, emergency rooms, and hospital departments. We currently have 1,542 patients entered in the database, from 35 centres across 23 countries. So far, 29 patients have been followed for 12 months and 387 have completed the 6-months follow up. This is a decent start, but I would like to strongly encourage EAN members and their institutions to get involved and contribute cases to what will become an invaluable resource for neurologists and clinicians to improve care for Covid-19 patients. Finally, I would like share a word on a forthcoming collaboration between EAN and the Human Brain Project in December, that I think will interest a lot of EAN members. The EAN-EBRAINS joint workshop on ‘The future of medical data sharing in clinical neurosciences’ will be a three-day virtual event that aims to discuss issues and challenges associated with data sharing in Europe, from ethics to data safety and privacy, including those specific to data federation, such as the development and validation of federated algorithms. The whole workshop is completely free of charge and registration is open until 25 November, so please check out the details and sign up! I wish you all a healthy and pleasant autumn and I look forward to updating you again. Best wishes Thomas Berger Chair of the EAN Scientific Committee

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Lisbon 2018: Report on Symposium 4: EAN/EAPC: Palliative care and neurology

June 17, 2018

EAN/EAPC Symposium 4: Palliative care and neurology

Chairpersons:
Paul Boon, Ghent, Belgium
Philip Larkin, Dublin, Ireland

Palliative care from a neurologist’s perspective: the evidence
David Oliver, Canterbury, United Kingdom

Guidelines in progress across Europe
Raymond Voltz, Cologne, Germany

What can a neurologist learn from palliative care specialists?
Simone Veronese, Torino, Italy

Palliative care has been used and reserved mainly for the care of patients with oncological disorders and end-of-life management. The better understanding of neurological conditions and their pathophysiological mechanisms has stressed the need for application of palliative care measures also in patients with neurological disorders.

1 Palliative care from a neurologist’s perspective: the evidence

Prof. David Oliver, University of Kent, opened the session. He started with the 2002 definition by World Health Organisation (WHO) on palliative care: an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Prof. Oliver then took us through different aspects of palliative care: physical, psychological (emotional), and spiritual. He mentioned different important issues that have to be considered, such as symptoms (e.g. pain, dyspnea, dysphagia, incontinence, constipation, speech problems, delirium, anxiety/depression), psychosocial care for the patient (multiple losses (physical, cognitive, emotional), fear of disease, fear of death and dying), as well as psychosocial care of family (role changes, losses (patient, within partnership), fears of the disease, death and dying…) and spiritual aspects (not necessarily religious, ideas about deeper meaning of life, why me?, fears of dying, fears of death).

He also talked about the EAN / EAPC Consensus on palliative care in neurology aimed at ensuring palliative care approach, with advance care planning, and early integration of care depending on the underlying diagnosis.

He emphasized the role of the multidisciplinary team including at least three professions (physician, nurse, social worker….), and published literature that supports the increased survival (specialist multidisciplinary team and survival benefit in ALS patients). He then talked about evidence for palliative care effectiveness in neurology and took us through published literature that supports symptom improvement, caregiver burden ease and cost-effectiveness in MS, as well as symptom improvement (pain, breathlessness, sleep disturbance, bowel problems), quality of life, and death rate in MS, ALS, PD, PDP.

2 Guidelines in progress across Europe

Prof. Raymond Voltz, University Hospital of Cologne, Germany, talked about reasons for guidelines and need to move forward in the field by connecting with other disciplines, professions, faculties, society/ community. Early palliative care trials in oncology demonstrate to meet the “triple aims”: better health, improved care, lower cost. Prof. Voltz emphasized the need for palliative care and neurology specialist to work together due to overlapping features of palliative care.

In order to address the issues of palliative care, the following are necessary: teams, publications, working groups, guidelines. Prof. Voltz then talked about principles of guideline development (methodology, scientific, clinical evidence, acceptance, willingness for consensus process, money, workforce…), and key recommendations by formal consensus. He then referred to the current guidelines (A consensus review on the development of palliative care for patients with chronic and progressive neurological disease from 2016 by D. J. Oliver et al., Eur J Neurol. 2016 Jan;23(1):30-8.). He then talked about several guidelines in palliative care and neurology raising recognition of importance, with palliative care and neurology specialists participating.

3 What can a neurologist learn from palliative care specialists?

Dr. Simone Veronese, Turin, Italy, talked about expectations from palliative care, different tools and a team approach to address the needs of patients and their families, including bereavement consoling. Palliative care is applicable early in the course of illness and it provides relief from pain and other distressing symptoms, affirms life and regards dying as a normal process, intends neither to hasten or postpone death, integrates the psychological and spiritual aspects of patient care, offers a support system to help patients live as actively as possible until death and offers a support system to help. He mentioned Cicely Saunders, founder of the Hospice Movement. He then talked about useful tools: Palliative care Outcome Scale (POS), Australia-modified Karnofsky performance scale (AKPS), Phase of illness (OACC, King’s College London), The Gold Standards Framework (GSF) Proactive Identification Guidance (PIG), as well as other different useful tools for palliative care. Palliative care offers accurate assessment and treatment to patients and care-givers’ needs.

 

 

 

Dr. Katarina Ivana Tudor
Department of Neurology
University Hospital Center Zagreb
Croatia

 

 

Lisbon 2018: Report on Symposium 4: EAN/EAPC: Palliative care and neurology was last modified: June 18th, 2018 by Editor
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Important Notice: beware of fake booking agents

April 1, 2019

Special Session: New Neurological Guidelines

June 26, 2022

Neurology Update: Epilepsy

August 24, 2020

Join us for the movement disorders programme at EAN 2023

May 24, 2023

Copenhagen 2016: Interview with Mads Ravnborg

May 31, 2016

Amsterdam 2017 – The Educational Sessions – Case-based workshops

March 1, 2017

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