title: Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group.
abstract: While advances in medicine, technology and healthcare services offer promises of longevity and improved quality of life (QoL), there is also increasing reliance on a patient׳s skills and motivation to optimize all the benefits available. Patient engagement in their own healthcare has been described as the 'blockbuster drug of the century'. In multiple sclerosis (MS), patient engagement is vital if outcomes for the patient, society and healthcare systems are to be optimized. The MS in the 21st Century Steering Group devised a set of themes that require action with regard to patient engagement in MS, namely: 1) setting and facilitating engagement by education and confidence-building; 2) increasing the importance placed on QoL and patient concerns through patient-reported outcomes (PROs); 3) providing credible sources of accurate information; 4) encouraging treatment adherence through engagement; and 5) empowering through a sense of responsibility. Group members independently researched and contributed examples of patient engagement strategies from several countries and examined interventions that have worked well in areas of patient engagement in MS, and other chronic illnesses. The group presents their perspective on these programs, discusses the barriers to achieving patient engagement, and suggests practical strategies for overcoming these barriers. With an understanding of the issues that influence patient engagement in MS, we can start to investigate ways to enhance engagement and subsequent health outcomes. Engaging patients involves a broad, multidisciplinary approach.
authors.affiliation: Sozialstiftung Bamberg Hospital, Bamberg, Germany. Electronic address: peter.rieckmann@sozialstiftung-bamberg.de.
authors.forename: Peter
authors.initials: P
authors.lastname: Rieckmann
authors.affiliation: Moscow MS Centre, Russian State Research Medical University named by NI Pirogov, Moscow, Russia.
authors.forename: Alexey
authors.initials: A
authors.lastname: Boyko
authors.affiliation: Università di Roma Tor Vergata, Rome, Italy.
authors.forename: Diego
authors.initials: D
authors.lastname: Centonze
authors.affiliation: Tampere University Hospital, Tampere, Finland.
authors.forename: Irina
authors.initials: I
authors.lastname: Elovaara
authors.affiliation: Blizard Institute, Bart׳s School of Medicine and Dentistry, London, UK.
authors.forename: Gavin
authors.initials: G
authors.lastname: Giovannoni
authors.affiliation: General Faculty Hospital, Charles University, Prague, Czech Republic.
authors.forename: Eva
authors.initials: E
authors.lastname: Havrdová
authors.affiliation: European Charcot Foundation, Molenhoek, The Netherlands.
authors.forename: Otto
authors.initials: O
authors.lastname: Hommes
authors.affiliation: Kliniken Valens, Valens, Switzerland.
authors.forename: Jurg
authors.initials: J
authors.lastname: Kesselring
authors.affiliation: European Health Economics, Spéracèdes, France.
authors.forename: Gisela
authors.initials: G
authors.lastname: Kobelt
authors.affiliation: Royal Holloway, University of London, Egham, UK.
authors.forename: Dawn
authors.initials: D
authors.lastname: Langdon
authors.affiliation: CHUM Research Centre, Montreal, Quebec, Canada.
authors.forename: Jacques
authors.initials: J
authors.lastname: LeLorier
authors.affiliation: Western University, London, Ontario, Canada.
authors.forename: Sarah A
authors.initials: SA
authors.lastname: Morrow
authors.affiliation: University Hospital San Carlos, Madrid, Spain.
authors.forename: Celia
authors.initials: C
authors.lastname: Oreja-Guevara
authors.affiliation: Universitätsspital Zürich, Zürich, Switzerland.
authors.forename: Sven
authors.initials: S
authors.lastname: Schippling
authors.affiliation: Rehabilitation in MS (RIMS), Brussels, Belgium.
authors.forename: Christoph
authors.initials: C
authors.lastname: Thalheim
authors.affiliation: Northern Ireland Neurology Service, Portadown, UK.
authors.forename: Heidi
authors.initials: H
authors.lastname: Thompson
authors.affiliation: University Hospital of Lille, Lille, France.
authors.forename: Patrick
authors.initials: P
authors.lastname: Vermersch
mesh_terms: D006801:Humans; D009042:Motivation; D009103:Multiple Sclerosis / Q000523:psychology* / Q000628:therapy*; D010358:Patient Participation; D018802:Patient-Centered Care; D011788:Quality of Life
keywords: Care; Management; Multiple sclerosis; Patient engagement; Shared decision-making