European academy of neurology guideline on palliative care of people with severe multiple sclerosis
ECTRIMS Online Library. Solari A. 09/13/19; 279582; 337
Alessandra Solari
Alessandra Solari
Contributions
Abstract

Abstract: 337

Type: Scientific Session

Abstract Category: Scientific Session 17: Late Breaking News

A. Solari1, A. Giordano1,2, S. Köpke3, F. Patti4, J. Drulovic5, J. Sastre-Garriga6, I. Kleiter7, A.C. Rahn8, E. Silber9, R. Milo10, J. Vosburgh11, J. Mens12, I. Milanov13, T. Pekmezovic14, E.R. Meza-Murillo6, M. Copetti15, K. Aleksovska16, J. Bay17, M.A. Battaglia18, R. Voltz19, S. Veronese20, D.J. Oliver21

1Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico C. Besta, Milan, 2Department of Psychology, University of Turin, Turin, Italy, 3Institute of Social Medicine and Epidemiology, University of Lubeck, Lubeck, Germany, 4Neurology Clinic, Multiple Sclerosis Centre, University Hospital Policlinico Vittorio Emanuele, Catania, Italy, 5Clinic of Neurology, CSS, Faculty of Medicine, University Hospital of Belgrade, Belgrade, Serbia, 6MS Centre of Catalonia (Cemcat), University Hospital Vall d'Hebron, Barcelona, Spain, 7Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Berg, 8Institute of Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf,, Hamburg, Germany, 9Department of Neurology, King's College Hospital NHS Foundation Trust, London, United Kingdom, 10Barzilai Medical Center, Ashkelon; Ben-Gurion University of the Negev, Ashkelon; Beer-Sheva, 11Israel Multiple Sclerosis Society, Tel-Aviv, Israel, 12Nieuw Unicum, Zandvoort, The Netherlands, 13Neurology Clinic, Medical University of Sofia, Sofia, Bulgaria, 14Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia, 15Unit of Biostatistics, Fondazione IRCCS Casa Sollievo della Sofferenza, 16Neurology Unit, Fondazione IRCCS Casa Sollievo della Sofferenza; European Academy of Neurology, San Giovanni Rotondo, Italy, 17Multiple Sclerosis International Federation, People with MS Advisory Committee, Copenhagen, Denmark, 18Department of Life Sciences, University of Siena, Siena, Italy, 19Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany, 20FARO Charitable Foundation, Turin, Italy, 21The Tizard Centre, University of Kent, Canterbury, United Kingdom

Background and aim: Optimizing the care of people with severe multiple sclerosis (MS) is hindered by a fragmented and varied care across Europe. Availability and involvement of palliative care (PC) services also vary between and within European countries. This guideline was devised by a task force appointed by the European Academy of Neurology in partnership with the European Association for PC and the European network for best practice and research in MS Rehabilitation. Members were also appointed by the MS International Federation and by the European Committee for Treatment and Research in MS.
Methods: Based on GRADE method, 10 clinical questions were formulated from literature search, expert survey and direct engagement of MS patients and caregivers from seven European countries. A systematic review of the literature was performed and recommendations were developed.
Results: We found no studies for 4/10 questions. Meta-analysis was possible for one question (symptom management) and individual participant data meta-analysis for two questions ( general and specialist PC). Of 10 publications on PC, three were randomized controlled studies (RCTs) and one qualitative study. Two RCTs compared home-based specialist PC to usual care, and one home-based general PC to usual care. Overall 146 severely affected MS patients and 137 caregivers participated. The intervention lasted 3-6 months. Risk of bias was overall low except for performance (all RCTs) and detection bias (two RCTs). Eight outcomes were assessed by all the RCTs: pain, shortness of breath, bladder problems, bowel problems, anxiety, depression, sleeping problems, and caregiver burden. A statistically significant effect in favour of PC was found for pain (regression coefficient, RC -9.8; 95% confidence interval, CI -18.8 - -0.8) and sleeping problems (RC -9.9; 95% CI -31.5 - -3.2). A per-protocol analysis additionally found a reduction in caregiver burden, for specialist PC only (RC -8.2; 95% CI -15.9 - -0.5). No studies were found on in- or outpatient PC.
Conclusions: People with severe MS might be offered home-based PC (weak recommendation, low certainty of evidence). People with severe MS might be offered in- or outpatient PC (weak recommendation, very low certainty of evidence). Patient preference, living conditions and availability of PC services should be considered. Recommendations for the other clinical questions and areas deserving attention for further research will be presented.
Disclosure: Dr Drulovic serves on scientific advisory boards for Bayer Schering Pharma, Merck Serono, TEVA, Sanofi Genzyme; received speaker honoraria from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, Medis; and has also received research grant support from the Ministry of Education and Science, Republic of Serbia (project no. 175031). She is the principal investigator in clinical trials forMerck Serono, Teva, Biogen Idec, Roche, Sanofi Genzyme, Celgene, outside the submitted work. Dr Pekmezovic received speaker honoraria from Teva, Roche, Medis, Gedeon Richter; and has also received research grant support from the Ministry of Education, Science and Technological Development of the Republic of Serbia (projects no. 175087 and 175090), outside the submitted work. Dr Voltz reports personal fees from Prostrakan, Pfizer, MSD Sharp & Dome, AOK, grants from TEVA/ EffenDys, Otsuka, DMSG/Hertie Stiftung, outside the submitted work. Dr Solari reports grants from the Italian MS Foundation (FISM), European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono, Novartis; she received personal fees from Almirall, Excemed, Genzyme, Merck Serono, Teva, outside the submitted work. All the other authors have nothing to declare.

Abstract: 337

Type: Scientific Session

Abstract Category: Scientific Session 17: Late Breaking News

A. Solari1, A. Giordano1,2, S. Köpke3, F. Patti4, J. Drulovic5, J. Sastre-Garriga6, I. Kleiter7, A.C. Rahn8, E. Silber9, R. Milo10, J. Vosburgh11, J. Mens12, I. Milanov13, T. Pekmezovic14, E.R. Meza-Murillo6, M. Copetti15, K. Aleksovska16, J. Bay17, M.A. Battaglia18, R. Voltz19, S. Veronese20, D.J. Oliver21

1Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico C. Besta, Milan, 2Department of Psychology, University of Turin, Turin, Italy, 3Institute of Social Medicine and Epidemiology, University of Lubeck, Lubeck, Germany, 4Neurology Clinic, Multiple Sclerosis Centre, University Hospital Policlinico Vittorio Emanuele, Catania, Italy, 5Clinic of Neurology, CSS, Faculty of Medicine, University Hospital of Belgrade, Belgrade, Serbia, 6MS Centre of Catalonia (Cemcat), University Hospital Vall d'Hebron, Barcelona, Spain, 7Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Berg, 8Institute of Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf,, Hamburg, Germany, 9Department of Neurology, King's College Hospital NHS Foundation Trust, London, United Kingdom, 10Barzilai Medical Center, Ashkelon; Ben-Gurion University of the Negev, Ashkelon; Beer-Sheva, 11Israel Multiple Sclerosis Society, Tel-Aviv, Israel, 12Nieuw Unicum, Zandvoort, The Netherlands, 13Neurology Clinic, Medical University of Sofia, Sofia, Bulgaria, 14Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia, 15Unit of Biostatistics, Fondazione IRCCS Casa Sollievo della Sofferenza, 16Neurology Unit, Fondazione IRCCS Casa Sollievo della Sofferenza; European Academy of Neurology, San Giovanni Rotondo, Italy, 17Multiple Sclerosis International Federation, People with MS Advisory Committee, Copenhagen, Denmark, 18Department of Life Sciences, University of Siena, Siena, Italy, 19Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany, 20FARO Charitable Foundation, Turin, Italy, 21The Tizard Centre, University of Kent, Canterbury, United Kingdom

Background and aim: Optimizing the care of people with severe multiple sclerosis (MS) is hindered by a fragmented and varied care across Europe. Availability and involvement of palliative care (PC) services also vary between and within European countries. This guideline was devised by a task force appointed by the European Academy of Neurology in partnership with the European Association for PC and the European network for best practice and research in MS Rehabilitation. Members were also appointed by the MS International Federation and by the European Committee for Treatment and Research in MS.
Methods: Based on GRADE method, 10 clinical questions were formulated from literature search, expert survey and direct engagement of MS patients and caregivers from seven European countries. A systematic review of the literature was performed and recommendations were developed.
Results: We found no studies for 4/10 questions. Meta-analysis was possible for one question (symptom management) and individual participant data meta-analysis for two questions ( general and specialist PC). Of 10 publications on PC, three were randomized controlled studies (RCTs) and one qualitative study. Two RCTs compared home-based specialist PC to usual care, and one home-based general PC to usual care. Overall 146 severely affected MS patients and 137 caregivers participated. The intervention lasted 3-6 months. Risk of bias was overall low except for performance (all RCTs) and detection bias (two RCTs). Eight outcomes were assessed by all the RCTs: pain, shortness of breath, bladder problems, bowel problems, anxiety, depression, sleeping problems, and caregiver burden. A statistically significant effect in favour of PC was found for pain (regression coefficient, RC -9.8; 95% confidence interval, CI -18.8 - -0.8) and sleeping problems (RC -9.9; 95% CI -31.5 - -3.2). A per-protocol analysis additionally found a reduction in caregiver burden, for specialist PC only (RC -8.2; 95% CI -15.9 - -0.5). No studies were found on in- or outpatient PC.
Conclusions: People with severe MS might be offered home-based PC (weak recommendation, low certainty of evidence). People with severe MS might be offered in- or outpatient PC (weak recommendation, very low certainty of evidence). Patient preference, living conditions and availability of PC services should be considered. Recommendations for the other clinical questions and areas deserving attention for further research will be presented.
Disclosure: Dr Drulovic serves on scientific advisory boards for Bayer Schering Pharma, Merck Serono, TEVA, Sanofi Genzyme; received speaker honoraria from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, Medis; and has also received research grant support from the Ministry of Education and Science, Republic of Serbia (project no. 175031). She is the principal investigator in clinical trials forMerck Serono, Teva, Biogen Idec, Roche, Sanofi Genzyme, Celgene, outside the submitted work. Dr Pekmezovic received speaker honoraria from Teva, Roche, Medis, Gedeon Richter; and has also received research grant support from the Ministry of Education, Science and Technological Development of the Republic of Serbia (projects no. 175087 and 175090), outside the submitted work. Dr Voltz reports personal fees from Prostrakan, Pfizer, MSD Sharp & Dome, AOK, grants from TEVA/ EffenDys, Otsuka, DMSG/Hertie Stiftung, outside the submitted work. Dr Solari reports grants from the Italian MS Foundation (FISM), European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono, Novartis; she received personal fees from Almirall, Excemed, Genzyme, Merck Serono, Teva, outside the submitted work. All the other authors have nothing to declare.

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