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Comparing patient and healthcare professional perceptions on multiple sclerosis management and care - where do their priorities differ? Results from a qualitative survey
Author(s): ,
S. Schippling
Affiliations:
Universitätsspital Zürich, Zürich, Switzerland
,
P. Vermersch
Affiliations:
University of Lille, Lille, France
,
J. Kesselring
Affiliations:
Kliniken Valens, Valens
,
E. Verdun di Cantogno
Affiliations:
Ares Trading S.A. –
MS in the 21st Century Steering Group
MS in the 21st Century Steering Group
Affiliations:
ECTRIMS Online Library. Vermersch P. Oct 12, 2018; 229128
Patrick Vermersch
Patrick Vermersch
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Abstract: P1288

Type: Poster Sessions

Abstract Category: Therapy - Others

Background: The MS in the 21st Century initiative is led by a steering group (SG) of international multiple sclerosis (MS) specialists and patient advocates with a current focus of improving education and communication between healthcare professionals (HCPs) and people with MS.
Objective: To compare the priorities of the MS clinical community and patients on MS management and care. Particular emphasis was on patient support at diagnosis, treatment decisions, and communicating the concept of disease progression.
Method: An electronic survey was developed to gain insight into HCPs' opinions on unmet needs in MS management. This was conducted at two international neurology congresses (2016 and 2017). An equivalent patient survey was developed and conducted at a patient meeting in 2017. Multiple answers were solicited in response to 10 questions.
Results: A total of 162 HCPs and 108 MS patients completed the survey, with 97.5% and 85.2% reporting at least one communication challenge at diagnosis, respectively. The most frequently reported challenge for HCPs was lack of time with the patient (51.2%). Patients also reported a lack of time (37.0%), but also difficulty understanding their treatment options (35.2%) and disease status (42.6%). Both HCPs and patients agreed the most important treatment consideration for patients was that it slows disease progression (49.4% and 58.3%, respectively). HCPs felt the biggest barrier to effective communication was in helping patients to understand complicated information (30.9%). Patients also expressed difficulty in understanding MS (25.9%), but felt HCPs' misunderstanding of patient priorities (40.7%) was a barrier.
Conclusion: HCPs and patients reported a lack of time and resources, particularly at diagnosis; however, there were distinct variations in priorities and perceptions surrounding treatment decisions. Both groups reported a number of barriers to effective communication, which supports the need for joint education related to communication.
Disclosure: The MS in the 21st Century initiative is financially supported solely by Merck KGaA, Darmstadt, Germany. Secretariat support and editorial input was provided by Cello Health Communications. Medical writing assistance was provided by Cello Health Communications (Owen Webb) and was funded by Merck KGaA, Darmstadt, Germany.
Patrick Vermersch receives Honoraria and consulting fees from: Biogen Idec, Sanofi Genzyme, Bayer, Novartis, Teva, Merck Serono, GSK and Almirall. Research support from Biogen Idec, Sanofi Genzyme, Bayer and Merck Serono.
Sven Schippling receives consulting and speaker fees and travel grants from Biogen Idec, Bayer, Merck Serono, Sanofi Genzyme/Sanofi Aventis, Novartis, Teva, and research grants from Bayer, Biogen Idec, Merck Serono, Sanofi Genzyme/Sanofi Aventis, Novartis.
Jürg Kesselring receives honoraria from Merck Serono.
Elisabetta Verdun Di Cantogno is an employee of Merck KGaA.
MS in the 21st Century Steering Group members: Peter Rieckmann, Diego Centonze, Gavin Giovannoni, Celia Oreja‐Guevara, Jurg Kesselring, Dawn Langdon, Sarah Morrow, Sven Schippling, Heidi Thompson, Patrick Vermersch, Birgit Bauer, Jocelyne Nouvet‐Gire, Maria Paz Giambastiani, Maija Pontaga, Stanca Potra, Jane Shanahan, Pieter van Galen and David Yeandle.

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