EAN guideline on palliative care of people with severe, progressive multiple sclerosis

• DOI: 10.1111/ene.14248
• Publication Date: 2020-05-29T14:59:25Z
• Authors: A. Solari; A. Giordano; J. Sastre‐Garriga; S. Köpke; A. C. Rahn; I. Kleiter; K. Aleksovska; M. A. Battaglia; J. Bay; M. Copetti; J. Drulovic; L. Kooij; J. Mens; E. R. Meza Murillo; I. Milanov; R. Milo; T. Pekmezovic; J. Vosburgh; E. Silber; S. Veronese; F. Patti; R. Voltz; D. Oliver
• Keywords: Guideline; Advance Care Planning; Grading (engineering)

Background and purpose Patients with severe, progressive multiple sclerosis (MS) have complex physical psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was develop an evidence‐based practice guideline for the palliative care of patients MS. Methods This developed using Grading Recommendations Assessment, Development Evaluation methodology. Formulation questions performed Patients–Intervention–Comparator–Outcome format, involving patients, carers healthcare professionals (HPs). No uniform definition severe MS exists: guideline, constant bilateral support required walk 20 m without resting (Expanded Disability Status Scale score > 6.0) higher disability is referred to. When evidence lacking population, recommendations were formulated indirect good statements devised. Results Ten formulated. They encompassed general specialist care, advance planning, discussing HPs patient’s wish hasten death, symptom management, multidisciplinary rehabilitation, interventions caregivers HPs. A total 34 (33 weak, 1 strong) seven Conclusions provision home‐based (either specialist) recommended weak strength Further research on integration needed. Areas that currently lack efficacy population include management symptoms such as fatigue mood problems,