Universität zu Köln

Solari, A., Giordano, A., Sastre-Garriga, J., Kopke, S., Rahn, A. C., Kleiter, I, Aleksovska, K., Battaglia, M. A., Bay, J., Copetti, M., Drulovic, J., Kooij, L., Mens, J., Meza Murillo, E. R., Milanov, I, Milo, R., Pekmezovic, T., Vosburgh, J., Silber, E., Veronese, S., Patti, F., Voltz, R. and Oliver, D. (2020). EAN guideline on palliative care of people with severe, progressive multiple sclerosis. Eur. J. Neurol., 27 (8). S. 1510 - 1530. HOBOKEN: WILEY. ISSN 1468-1331

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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:	Creators Email ORCID ORCID Put Code Solari, A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Giordano, A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Sastre-Garriga, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kopke, S. UNSPECIFIED UNSPECIFIED UNSPECIFIED Rahn, A. C. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kleiter, I UNSPECIFIED UNSPECIFIED UNSPECIFIED Aleksovska, K. UNSPECIFIED UNSPECIFIED UNSPECIFIED Battaglia, M. A. UNSPECIFIED UNSPECIFIED UNSPECIFIED Bay, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Copetti, M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Drulovic, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Kooij, L. UNSPECIFIED UNSPECIFIED UNSPECIFIED Mens, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Meza Murillo, E. R. UNSPECIFIED UNSPECIFIED UNSPECIFIED Milanov, I UNSPECIFIED UNSPECIFIED UNSPECIFIED Milo, R. UNSPECIFIED UNSPECIFIED UNSPECIFIED Pekmezovic, T. UNSPECIFIED UNSPECIFIED UNSPECIFIED Vosburgh, J. UNSPECIFIED UNSPECIFIED UNSPECIFIED Silber, E. UNSPECIFIED UNSPECIFIED UNSPECIFIED Veronese, S. UNSPECIFIED UNSPECIFIED UNSPECIFIED Patti, F. UNSPECIFIED UNSPECIFIED UNSPECIFIED Voltz, R. UNSPECIFIED UNSPECIFIED UNSPECIFIED Oliver, D. UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-332650
DOI:	10.1111/ene.14248
Journal or Publication Title:	Eur. J. Neurol.
Volume:	27
Number:	8
Page Range:	S. 1510 - 1530
Date:	2020
Publisher:	WILEY
Place of Publication:	HOBOKEN
ISSN:	1468-1331
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language EUROPEAN ASSOCIATION; EMERGING SUBSPECIALTIES; PARKINSONS-DISEASE; WHITE PAPER; DEATH; NEUROLOGY; RECOMMENDATIONS; CAREGIVERS; MANAGEMENT; SURVIVAL Multiple languages Clinical Neurology; Neurosciences Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/33265