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

Peter Rieckmann, Alexey Boyko, Diego Centonze, Irina Elovaara, Gavin Giovannoni, Eva Havrdová, Otto Hommes, Jurg Kesselring, Gisela Kobelt, Dawn Langdon, Jacques Lelorier, Sarah A. Morrow, Celia Oreja-Guevara, Sven Schippling, Christoph Thalheim, Heidi Thompson, Patrick Vermersch

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)202-218
Number of pages17
JournalMultiple Sclerosis and Related Disorders
Volume4
Issue number3
DOIs
Publication statusPublished - May 1 2015

Keywords

  • Care
  • Management
  • Multiple sclerosis
  • Patientengagement
  • Shared decision-making

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

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  • Cite this

    Rieckmann, P., Boyko, A., Centonze, D., Elovaara, I., Giovannoni, G., Havrdová, E., Hommes, O., Kesselring, J., Kobelt, G., Langdon, D., Lelorier, J., Morrow, S. A., Oreja-Guevara, C., Schippling, S., Thalheim, C., Thompson, H., & Vermersch, P. (2015). Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group. Multiple Sclerosis and Related Disorders, 4(3), 202-218. https://doi.org/10.1016/j.msard.2015.02.005