Solari, Alessandra, Giordano, Andrea, Sastre-Garriga, Jaume, Koepke, Sascha, Rahn, Anne C., Kleiter, Ingo, Aleksovska, Katina, Battaglia, Mario A., Bay, Jette, Copetti, Massimiliano, Drulovic, Jelena, Kooij, Liesbeth, Mens, John, Meza Murillo, Edwin R., Milanov, Ivan, Milo, Ron, Pekmezovic, Tatiana, Vosburgh, Janine, Silber, Eli, Veronese, Simone ORCID: 0000-0002-9555-7252, Patti, Francesco, Voltz, Raymond and Oliver, David J. (2020). EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis. J. Palliat. Med., 23 (11). S. 1426 - 1444. NEW ROCHELLE: MARY ANN LIEBERT, INC. ISSN 1557-7740

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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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Solari, AlessandraUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Giordano, AndreaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sastre-Garriga, JaumeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Koepke, SaschaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rahn, Anne C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kleiter, IngoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Aleksovska, KatinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Battaglia, Mario A.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bay, JetteUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Copetti, MassimilianoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Drulovic, JelenaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kooij, LiesbethUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mens, JohnUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Meza Murillo, Edwin R.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Milanov, IvanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Milo, RonUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Pekmezovic, TatianaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vosburgh, JanineUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Silber, EliUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Veronese, SimoneUNSPECIFIEDorcid.org/0000-0002-9555-7252UNSPECIFIED
Patti, FrancescoUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Voltz, RaymondUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Oliver, David J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-332643
DOI: 10.1089/jpm.2020.0220
Journal or Publication Title: J. Palliat. Med.
Volume: 23
Number: 11
Page Range: S. 1426 - 1444
Date: 2020
Publisher: MARY ANN LIEBERT, INC
Place of Publication: NEW ROCHELLE
ISSN: 1557-7740
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
EUROPEAN ASSOCIATION; EMERGING SUBSPECIALTIES; PARKINSONS-DISEASE; WHITE PAPER; DEATH; NEUROLOGY; RECOMMENDATIONS; CAREGIVERS; MANAGEMENT; SURVIVALMultiple languages
Health Care Sciences & ServicesMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/33264

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