Multiple Sclerosis
Disparities in Nursing of Multiple Sclerosis Patients – Results of a European Nurse Survey
Hans-Peter Hartung,1 Nicki Ward-Abel6
Vicki Matthews,2 Amy Perrin Ross,3 Dorothea Pitschnau-Michel,4 Christoph Thalheim5 and on behalf of the Multiple Sclerosis-Nurse Empowering Education (MS-NEED) Study Group
1. Professor, and Chair, Department of Neurology, Neurology Clinic, Heinrich-Heine University, Düsseldorf; 2. MS Specialist Nurse Advisor, MS Trust and Clinical Nurse Specialist, Southampton University Hospitals Trust; 3. MS Specialist Nurse, Department of Neurosciences, Loyola University, Chicago; 4. Secretary General, German National MS Society and Board Member, European MS Platform; 5. Secretary General, European MS Platform; 6. Specialist MS Lecturer Practitioner, Birmingham City University, University Hospital
Abstract
Nurses play a critical role in caring for patients with multiple sclerosis (MS). The Multiple Sclerosis-Nurse Empowering Education (MS-NEED): European Survey was conducted to understand the role of nurses in MS and the provision of care across Europe. The survey focused on four key areas: clinical practice, advocacy, research and publication, and training and education. A total of 280 nurses were included from the UK, Germany, Italy, Poland, Finland and the Czech Republic. All participants were nurses actively working with MS patients. The role of the nurse in MS is diverse and varies substantially across Europe, leading to inequalities in patient care. A European consensus to define the roles and responsibilities of the MS nurse would facilitate consistency of care across all countries and help to achieve the best possible outcome for patients with MS in Europe.
Keywords Multiple sclerosis, nursing, nurse, treatment, MS-Nurse Empowering Education (MS-NEED), specialist role
Disclosure: Hans-Peter Hartung has received honoraria – with the approval of the Rector of Heinrich-Heine-University – for consulting, membership of steering committees and advisory boards and speaking at symposia from Bayer Healthcare, Biogen Idec, Genzyme, Merck Serono, Novartis Pharma AG, Teva and sanofi-aventis. Vicki Matthews has served on the Advisory Board as an Expert Consultant and Speaker for Merck Serono, Biogen Idec and Novartis Pharma AG, and all honoraria is donated to the MS Trust. Amy Perrin Ross has served on the Advisory Board, as a Consultant or a Speaker for Bayer Healthcare, EMD Serono, Pfizer Inc., Teva Neuroscience, Novartis Pharma AG, Genzyme, Acorda and Questcor. Nicki Ward-Abel has served on the advisory board, as a consultant or a speaker, for Bayer Schering, Merck Serono, Teva Neuroscience, Biogen Idec and Novartis Pharma AG. Dorothea Pitschnau-Michel and Christoph Thalheim have no conflicts of interest to declare. Acknowledgements: The Multiple Sclerosis-Nurse Empowering Education (MS-NEED) study group includes the European MS Platform (EMSP), the International Organization of MS Nurses (IOMSN) and Rehabilitation in MS (RIMS). The MS-NEED: European Survey was supported by an unrestricted educational grant from Novartis Pharma AG. The acceptance of this grant does not constitute endorsement by the EMSP of any of Novartis’ products. The EMSP does not approve, endorse or recommend any specific product or therapy but provides information to assist individuals in making their own decisions. The MS-NEED: European Survey was fielded by Adelphi International Research. Editorial support for the preparation of this manuscript was funded by the EMSP. Received: 28 January 2011 Accepted: 14 March 2011 Citation: European Neurological Review, 2011;6(2):106–9 Correspondence: Hans-Peter Hartung, Neurology Clinic, Heinrich-Heine University, Moorenstrasse 5, 40225 Düsseldorf, Germany. E:
hans-peter.hartung@uni-duesseldorf.de
Multiple sclerosis (MS) is a chronic autoimmune disease resulting in demyelination and axonal loss in the central nervous system (CNS).1 This may lead to significant neurological deficits and physical disability including blurred vision, speech problems, loss of balance and coordination, pain and fatigue.1–3
According to the natural history
of the disease, within 20 years of diagnosis approximately 50 % of patients will require the use of a wheelchair.4
MS represents a
significant burden on the quality of life of patients, including problems at work and in personal relationships.3,5,6
It is estimated that up to 2.5 million people across the world are affected by MS,7
including nearly half a million people in the EU.2
patients are diagnosed between 20 and 40 years of age,3 women affected for every two men.2
Most with three
Currently, there is no cure for MS, although the introduction of drugs in the 1990s aimed at modifying the course of the disease has made it an
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There are many complex challenges when caring for patients with MS and management strategies must address patients’ medical, social, vocational, emotional and educational needs.9
Therefore, it is
important that patients with MS have access to co-ordinated care from a specialised multidisciplinary team (MDT).2,9
As a part of this team, the
nurse has emerged as a key player in the provision of information, support and advice to patients with MS from the time of diagnosis and throughout the disease trajectory, providing a holistic, collaborative and coordinated approach to treatment.10
However, there is a need for
greater understanding and awareness of the role of nurses and to identify best practice in order to improve patient access to care and optimise quality of life.
© TOUCH BRIEFINGS 2011
increasingly treatable neurological condition. However, there is no doubt that the main goal of MS management continues to be improving patient quality of life by managing relapses, treating symptoms7
and offering timely ongoing support, information and advice to all those affected.8
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