Professor David Oliver, Honorary Professor at the University of Kent, UK, and Chair of the European Association for Palliative Care (EAPC) Reference Group on Neurology and Palliative Care, introduces the new guideline on palliative care for people with severe multiple sclerosis – and it’s OPEN ACCESS…
A new guideline has just been published on palliative care for people with severe multiple sclerosis (MS). There has been increasing interest in palliative care for people with neurological disease and in 2016 the European Academy of Neurology and the EAPC collaborated on the Consensus document on palliative care for people with progressive neurological disease. (1)
Led by Dr Alessandra Solari from Milan, the guideline includes representatives from the EAPC, European Academy of Neurology (EAN), European Network for Best Practice and Research in MS Rehabilitation (RIMS), the MS International Federation (MSIF), and the European Committee for Treatment and Research in MS (ECTRIMS). The group comprised 21 members from nine countries and three main disciplines, and included patient representatives. The group of patients studied were those with severe MS – requiring constant bilateral support to walk 20 metres without resting (Expanded Disability Status Scale score > 6.0), or higher disability.
The guideline looked at 10 main areas:
- The role of palliative care
- The role of specialist palliative care
- Advance care planning
- Discussion with health professional about hastening death
- Symptom management
- Multidisciplinary rehabilitation
- Caregiver education / training
- Caregiver practical / emotional support
- MS health professional education/ training in palliative care
- Specialist palliative care professional education/ training in MS.
The questions were developed within the group and rated for importance by the group and a client consultation panel, with people with MS from across Europe in MS Societies (2).Once the questions had been agreed, a Patients-Intervention-Comparator-Outcome (PICO) was developed for each one. A literature search was undertaken for each question and the group then graded the research using the GRADE (Grading of Recommendations, Assessment, Development and Evaluations) process before coming to a consensus decision on recommendations.
Thirty-four recommendations and seven good practice statements were made from the assessment of the 10 questions. In many cases, there was very little evidence and this was of variable quality. The main recommendations are:
- Home care palliative care is recommended for people with severe MS – weak strength recommendation
- Further research is needed on the integration of MS and palliative care – especially:
- Advance care planning
- Symptom management – fatigue and mood
- Interventions to help caregivers.
The Guideline is now available: on the EAN website and co-published in both the European Journal of Neurology, the official publication of the EAN, (2) and Journal of Palliative Medicine (an official journal of the EAPC). (3)
1. 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.org/10.1111/ene.12889.
2. Solari , A. Giordano, J. Sastre-Garriga, S. Kopke, A. C. Rahn, I. Kleiter, K. Aleksovska, M. A. Battaglia, J. Bay, M. Copetti, J. Drulovick , 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 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.org/10.1111/ene.14248.
3. 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, on behalf of the Guideline Task Force. EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis Journal of Palliative Medicine. doi.org/10.1089/jpm.2020.0220. Ahead of print.
- Contact Professor David Oliver by email.
- Contact Dr Alessandra Solari by email.
- EAPC Reference Group on Neurology and Palliative Care.
- Read more posts about neurology and palliative care on the EAPC blog.