The voice of people

with MS in Europe

MS-NEED / MS Nurse PRO

About the MS-NEED project

Introduction

Multiple Sclerosis (MS) is a chronic progressive autoimmune disorder that results in inflammatory invasion of the central nervous system, demyelination of axons, and axonal degeneration. Subsequent loss of neurological function leads to long-term disability and the need for specialised patient management facilitated by nurses.

Objectives

The Multiple Sclerosis-Nurse Empowering EDucation (MS-NEED): European Survey led by the European MS Platform (EMSP) was conducted to understand the role of nurses in MS and the provision of care across Europe.

Methods

The MS-NEED survey comprised a 35-minute questionnaire focusing on four key areas: clinical practice, advocacy, research and publication, and training and education. As determined by a 6-item screening questionnaire, all participants were nurses actively working with MS patients. Data was collected by Computer-Assisted Telephone Interviewing (CATI).

Results

A total of 280 nurses were included from the UK, Germany, Italy, Poland, Finland (n=50 per country) and Czech Republic (n=30). Results show that the role of the nurse in MS is diverse and varies substantially across Europe. In total, 21% (n=59) of nurses believe that they are perceived as leaders in patient care by their multidisciplinary team (MDT), whereas 30% (n=84) are perceived as the day-to-day patient advisor and 25% (n=70) as an intermediary between the MDT and patient. Overall, 31% (n=87) felt that standards of MS care are not well maintained in their country. Generally, nurses feel it is important to help with rehabilitation and access to new treatments. Most nurses (61%; n=171) have never undertaken MS research and this is largely because they do not have the opportunity or the time. Furthermore, 61% (n=171) have not had the opportunity or time to be involved in research activities. Training and education was inadequate for 21% (n=59) of nurses.

Conclusion

Nurses play a critical role in the daily care of MS patients; however, outcomes of the MS-NEED survey show disparities in nursing standards across Europe. In order to avoid inequalities in patient care, it is important to recognise nursing in MS as a speciality within Europe, to standardise and benchmark training, and to share best practice.