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Published in: Advances in Therapy 11/2019

Open Access 01-11-2019 | Multiple Sclerosis | Original Research

Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care

Authors: Celia Oreja-Guevara, Stanca Potra, Birgit Bauer, Diego Centonze, Maria-Paz Giambastiani, Gavin Giovannoni, Jürg Kesselring, Dawn Langdon, Sarah A. Morrow, Jocelyne Nouvet-Gire, Maija Pontaga, Peter Rieckmann, Sven Schippling, Nektaria Alexandri, Jane Shanahan, Heidi Thompson, Pieter Van Galen, Patrick Vermersch, David Yeandle

Published in: Advances in Therapy | Issue 11/2019

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Abstract

Introduction

Effective communication between patients and healthcare professionals (HCPs) is important to enhance outcomes in multiple sclerosis (MS). However, in practice, patients often report a disconnect in communication. Communication tools to aid patient–HCP communication have a long history of use in many chronic conditions. For example, symptom diaries have been shown to enhance outcomes in cancer, headache and sleep disorder management. MS in the 21st Century, a Steering Group of HCP specialists and patients with MS (PwMS), has created two communication tools designed for use by both patients and their HCPs.

Methods

The Steering Group first identified prominent issues in patient–HCP communication through group discussions and survey data. Following this, a series of workshops led to the development of two communication tools as potential solutions to these identified issues in communication.

Results

The two most prominent issues identified were HCP time constraints during appointments and the misalignment of patient and HCP priorities—the communication tools developed through the workshops were created to address these. The “myMS priorities” tool [see supplementary materials] is designed to maximize the use of consultation time while the “myMS commitments” tool [see supplementary materials] aims to improve patient–HCP shared decision-making.

Conclusions

The MS in the 21st Century Steering Group adopted a broad, iterative and collaborative approach in the development of these tools to help ensure they would be as useful as possible to both HCPs and PwMS. These tools have been developed through shared patient–HCP expertise and are based on existing tools in other therapy areas as well as a review of the existing literature and data from MS in the 21st Century Steering Group surveys. The next steps will focus on the validation of these tools through testing them in real-world environments and clinical trials.

Funding

Merck KGaA, Darmstadt, Germany.
Appendix
Available only for authorised users
Footnotes
1
The “Two monologues do not make a dialogue” workshops were conducted at international congresses ECTRIMS 2017, ECF 2017, CMSC 2018 and a Merck Patient Ambassador Summit 2018.
 
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Metadata
Title
Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care
Authors
Celia Oreja-Guevara
Stanca Potra
Birgit Bauer
Diego Centonze
Maria-Paz Giambastiani
Gavin Giovannoni
Jürg Kesselring
Dawn Langdon
Sarah A. Morrow
Jocelyne Nouvet-Gire
Maija Pontaga
Peter Rieckmann
Sven Schippling
Nektaria Alexandri
Jane Shanahan
Heidi Thompson
Pieter Van Galen
Patrick Vermersch
David Yeandle
Publication date
01-11-2019
Publisher
Springer Healthcare
Published in
Advances in Therapy / Issue 11/2019
Print ISSN: 0741-238X
Electronic ISSN: 1865-8652
DOI
https://doi.org/10.1007/s12325-019-01071-9

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