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EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis

Solari, Alessandra, Giordano, Andrea, Sastre-Garriga, Jaume, Köpke, Sascha, Rahn, Anne C., Kleiter, Ingo, Aleksovska, Katina, Battaglia, Mario A., Bay, Jette, Copetti, Massimiliano, and others. (2020) EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis. Journal of Palliative Medicine, . ISSN 1096-6218. (doi:10.1089/jpm.2020.0220) (KAR id:81917)


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 20m 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.

Item Type: Article
DOI/Identification number: 10.1089/jpm.2020.0220
Uncontrolled keywords: clinical practice guideline; GRADE assessment; multiple sclerosis; palliative care
Subjects: R Medicine
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Tizard
Depositing User: David Oliver
Date Deposited: 30 Jun 2020 10:24 UTC
Last Modified: 10 Dec 2022 03:54 UTC
Resource URI: (The current URI for this page, for reference purposes)

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Oliver, David J..

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