A Solari1, A Giordano1,2, J Sastre-Garriga3, S Köpke4,5, A C Rahn5, I Kleiter6, K Aleksovska7, M A Battaglia8, J Bay9, M Copetti10, J Drulovic11, L Kooij12, J Mens12, E R Meza Murillo3, I Milanov13, R Milo14,15, T Pekmezovic16, J Vosburgh17, E Silber18, S Veronese19, F Patti20, R Voltz21,22, D Oliver23. 1. Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. 2. Department of Psychology, University of Turin, Turin, Italy. 3. Department of Neurology/Neuroimmunology, Multiple Sclerosis Centre of Catalonia (Cemcat), Hospital Universitari Vall d'Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain. 4. Institute of Clinical Nursing Science, University of Cologne, Cologne, Germany. 5. Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. 6. Marianne-Strauß-Klinik, Behandlungszentrum Kempfenhausen für Multiple Sklerose Kranke gGmbH, Berg, Germany. 7. European Academy of Neurology, Vienna, Austria. 8. Department of Life Sciences, University of Siena, Siena, Italy. 9. Multiple Sclerosis International Federation, People with MS Advisory Committee, Copenhagen, Denmark. 10. Unit of Biostatistics, Fondazione IRCCS Casa Sollievo della Sofferenza, San Giovanni Rotondo, Italy. 11. Clinic of Neurology, CCS, Faculty of Medicine, University of Belgrade, Belgrade, Serbia. 12. Nieuw Unicum, Zandvoort, The Netherlands. 13. Medical University of Sofia, Sofia, Bulgaria. 14. Department of Neurology, Barzilai Medical Center, Ashkelon, Israel. 15. Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer-Sheva, Israel. 16. Faculty of Medicine, University of Belgrade, Belgrade, Serbia. 17. Israel Multiple Sclerosis Society, Tel-Aviv, Israel. 18. Department of Neurology, King's College Hospital NHS Foundation Trust, London, UK. 19. FARO Charitable Foundation, Turin, Italy. 20. Neurology Clinic, Multiple Sclerosis Centre, University Hospital Policlinico Vittorio Emanuele, Catania, Italy. 21. Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. 22. Center for Health Services Research (ZVFK), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. 23. The Tizard Centre, University of Kent, Canterbury, UK.
Abstract
BACKGROUND AND PURPOSE: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. METHODS: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score > 6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. RESULTS: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. CONCLUSIONS: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.
BACKGROUND AND PURPOSE:Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. METHODS: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score > 6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. RESULTS: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. CONCLUSIONS: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.
Authors: Jonathan Koffman; Clarissa Penfold; Laura Cottrell; Bobbie Farsides; Catherine J Evans; Rachel Burman; Richard Nicholas; Stephen Ashford; Eli Silber Journal: PLoS One Date: 2022-05-26 Impact factor: 3.752
Authors: Laura Cottrell; Guillaume Economos; Catherine Evans; Eli Silber; Rachel Burman; Richard Nicholas; Bobbie Farsides; Stephen Ashford; Jonathan Simon Koffman Journal: PLoS One Date: 2020-10-16 Impact factor: 3.240