Literature DB >> 26008937

Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group.

Peter Rieckmann1, Alexey Boyko2, Diego Centonze3, Irina Elovaara4, Gavin Giovannoni5, Eva Havrdová6, Otto Hommes7, Jurg Kesselring8, Gisela Kobelt9, Dawn Langdon10, Jacques LeLorier11, Sarah A Morrow12, Celia Oreja-Guevara13, Sven Schippling14, Christoph Thalheim15, Heidi Thompson16, Patrick Vermersch17.   

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.
Copyright © 2015 The Authors. Published by Elsevier B.V. All rights reserved.

Entities:  

Keywords:  Care; Management; Multiple sclerosis; Patient engagement; Shared decision-making

Mesh:

Year:  2015        PMID: 26008937     DOI: 10.1016/j.msard.2015.02.005

Source DB:  PubMed          Journal:  Mult Scler Relat Disord        ISSN: 2211-0348            Impact factor:   4.339


  19 in total

1.  Decision making in MS: factors affecting engagement in treatment choices.

Authors:  Nils Muhlert
Journal:  Funct Neurol       Date:  2016 Jan-Mar

2.  Exit strategies for "needle fatigue" in multiple sclerosis: a propensity score-matched comparison study.

Authors:  Luca Prosperini; Antonio Cortese; Matteo Lucchini; Laura Boffa; Giovanna Borriello; Maria Chiara Buscarinu; Fioravante Capone; Diego Centonze; Chiara De Fino; Daniela De Pascalis; Roberta Fantozzi; Elisabetta Ferraro; Maria Filippi; Simonetta Galgani; Claudio Gasperini; Shalom Haggiag; Doriana Landi; Girolama Marfia; Giorgia Mataluni; Enrico Millefiorini; Massimiliano Mirabella; Fabrizia Monteleone; Viviana Nociti; Simona Pontecorvo; Silvia Romano; Serena Ruggieri; Marco Salvetti; Carla Tortorella; Silvana Zannino; Giancarlo Di Battista
Journal:  J Neurol       Date:  2019-11-13       Impact factor: 4.849

3.  Therapy satisfaction and adherence in patients with relapsing-remitting multiple sclerosis: the THEPA-MS survey.

Authors:  Rocco Haase; Jennifer S Kullmann; Tjalf Ziemssen
Journal:  Ther Adv Neurol Disord       Date:  2016-03-15       Impact factor: 6.570

4.  Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis.

Authors:  Aliza Ben-Zacharia; Meagan Adamson; Allison Boyd; Paula Hardeman; Jennifer Smrtka; Bryan Walker; Tracy Walker
Journal:  Int J MS Care       Date:  2018 Nov-Dec

5.  Support Group Participation: Effect on Perceptions of Patients with Newly Diagnosed Multiple Sclerosis.

Authors:  Meghan Garabedian; Erin Perrone; Caitlin Pileggi; Vanessa Zimmerman
Journal:  Int J MS Care       Date:  2019-10-08

Review 6.  Shared Decision-making in Autoimmune Neurology: Making Decisions in the Face of Uncertainty.

Authors:  David A Lapides
Journal:  Neurol Clin Pract       Date:  2021-04

7.  The perceived impact of multiple sclerosis and self-management: The mediating role of coping strategies.

Authors:  Maciej Wilski; Waldemar Brola; Magdalena Łuniewska; Maciej Tomczak
Journal:  PLoS One       Date:  2021-03-11       Impact factor: 3.240

8.  Lifestyle, medication and socio-demographic determinants of mental and physical health-related quality of life in people with multiple sclerosis.

Authors:  George A Jelinek; Alysha M De Livera; Claudia H Marck; Chelsea R Brown; Sandra L Neate; Keryn L Taylor; Tracey J Weiland
Journal:  BMC Neurol       Date:  2016-11-22       Impact factor: 2.474

9.  Shared Decision Making and Autonomy Among US Participants with Multiple Sclerosis in the NARCOMS Registry.

Authors:  Stacey S Cofield; Nina Thomas; Tuula Tyry; Robert J Fox; Amber Salter
Journal:  Int J MS Care       Date:  2017 Nov-Dec

10.  Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education.

Authors:  Daniel Kantor; Jeremy R Bright; Jeri Burtchell
Journal:  Neurol Ther       Date:  2017-12-14
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