EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis
Solari, Alessandra (Fondazione IRCCS Istituto Neurologico Carlo Besta)
Giordano, Andrea (University of Turin)
Sastre-Garriga, Jaume (Hospital Universitari Vall d'Hebron)
Köpke, Sascha (University Medical Center Hamburg-Eppendorf)
Rahn, Anne Christin (University Medical Center Hamburg-Eppendorf)
Kleiter, Ingo (Marianne-Strauß-Klinik)
Aleksovska, Katina (European Academy of Neurology (Austria))
Battaglia, Mario A. (University of Siena)
Bay, Jette (People with MS Advisory Committee (Dinamarca))
Copetti, Massimiliano (Fondazione IRCCS Casa Sollievo della Sofferenza)
Drulovic, Jelena (University of Belgrade)
Kooij, Liesbeth (Nieuw Unicum, Zandvoort)
Mens, John (Nieuw Unicum)
Murillo, Edwin R. Meza (Hospital Universitari Vall d'Hebron)
Milanov, Ivan (Medical University of Sofia)
Milo, Ron (Ben-Gurion University of the Negev)
Pekmezovic, Tatiana (University of Belgrade)
Vosburgh, Janine (Israel Multiple Sclerosis Society)
Silber, Eli (King's College Hospital NHS Foundation Trust)
Veronese, Simone (FARO Charitable Foundation)
Patti, Francesco (University Hospital Policlinico Vittorio Emanuele)
Voltz, Raymond (University of Cologne)
Oliver, David J. (University of Kent, Canterbury)
Universitat Autònoma de Barcelona

Date:	2020
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.
Rights:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original.
Language:	Anglès
Document:	Article ; recerca ; Versió publicada
Subject:	Clinical practice guideline ; GRADE assessment ; Multiple sclerosis ; Palliative care
Published in:	Journal of Palliative Medicine, Vol. 23 (october 2020) , p. 1426-1443, ISSN 1557-7740

DOI: 10.1089/jpm.2020.0220
PMID: 32469284

18 p, 970.4 KB

The record appears in these collections:
Articles > Research articles
Articles > Published articles