A new guideline on the palliative care for people with severe multiple sclerosis has been produced by the EAN, in collaboration with the European Association for Palliative Care, 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).
This guideline has been led by Dr Alessandra Solari, from Milan, and has involved a wide group of neurologists, palliative care specialists and representatives from many organisations, including people with MS (1). The guideline considers:
- 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
The evidence was assessed using the GRADE process and 34 recommendations and seven good practice statements have been made. There was little evidence for some areas and the quality of evidence was variable. However, the Guideline is supportive of the role of palliative care for people with advanced MS, and for the need for further research.
The Guideline is to be published in both the European Journal of Neurology (2) and the Journal of Palliative Medicine (3), a journal associated with the EAPC. This is the first time that co-publication has been possible, and marks a further development in the collaboration between the EAN and EAPC.
- 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.
- Kopke S, Giordano A, Veronese S, et al Patient and caregiver involvement in the formulation of guideline questions: findings form the European Academy of neurology guideline on palliative care of people with severe multiple sclerosis. Eur J Neurol 2019; 26: 41-50
- 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. Eur Neurol 2020, 0: 1–20 Doi: http://dx.doi.org/10.1111/ene.14248
- 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