D J Oliver1,2, G D Borasio3, A Caraceni4,5, M de Visser6, W Grisold7, S Lorenzl8, S Veronese9, R Voltz10,11. 1. Palliative Medicine, Wisdom Hospice, Rochester, UK. 2. University of Kent, Kent, UK. 3. Service de soins palliatifs, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland. 4. Palliative Care Unit, Fondazione IRCCS Instituto Nazionale dei Tumori, Milan, Italy. 5. European Palliative Care Research Center NTNU, Trondheim, Norway. 6. Department of Neurology, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands. 7. Department of Neurology, Kaiser Franz Josef Hospital, Vienna, Austria. 8. Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria. 9. Fondazione Assistenza e Ricerca in Oncologia, Turin, Italy. 10. Department of Palliative Medicine, University Hospital, Cologne, Germany. 11. EAN Subspeciality Scientific Panel on Palliative Care, Vienna, Austria.
Abstract
BACKGROUND AND PURPOSE: The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families. METHODS: A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations. RESULTS: Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point). CONCLUSIONS: The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.
BACKGROUND AND PURPOSE: The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families. METHODS: A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations. RESULTS: Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point). CONCLUSIONS: The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care.
Authors: Carolina Oc Latorraca; Ana Luiza C Martimbianco; Daniela V Pachito; Maria Regina Torloni; Rafael L Pacheco; Juliana Gomes Pereira; Rachel Riera Journal: Cochrane Database Syst Rev Date: 2019-10-22
Authors: A M Giovannetti; E Pietrolongo; A Giordano; V Cimino; A Campanella; G Morone; A Fusco; A Lugaresi; P Confalonieri; F Patti; M G Grasso; M Ponzio; S Veronese; A Solari Journal: Qual Life Res Date: 2016-04-28 Impact factor: 4.147