First Major European-Wide Nurse Survey Shows Disparity in Nursing of MS Patients
Multiple Sclerosis in Europe: Current Practice and Future Needs
Multiple sclerosis (MS) affects nearly half a million people in the European Union (Figure 1). MS nurses play a pivotal role in delivering MS patient care.
Currently there are signifi cant national and regional disparities in the provision and quality of services and support for people affected by MS across the European Union.1
There is a need for greater understanding and awareness of the role of MS nurses and to identify best practice in order to improve patient access to care and optimise quality of life.
The Multiple Sclerosis-Nurse Empowering EDucation (MS-
NEED): European Survey led by the European Multiple Sclerosis Platform (EMSP) in cooperation with the International Organization of Multiple Sclerosis Nurses (IOMSN) and Rehabilitation in MS (RIMS) centres, was conducted to understand and raise awareness of the roles of nurses in MS and the provision of care across Europe.
Key aims of the survey
The survey aims to identify areas for improvement and best practice, and to promote the need for comprehensive nurse services across Europe.
How the survey was conducted
Respondents were recruited from six countries within the European Union.* The survey comprised of a 35-minute telephone questionnaire focusing on four key areas:
• Clinical practice • Advocacy • Training and education • Research and publication
*Respondents were recruited from six countries in the European Union: UK, Germany, Italy, Poland, Finland and the Czech Republic. Respondents were either specialist nurses or nurses who regularly treated patients with MS.
Why yes?
Information/data/ education
Better healthcare quality/improved QoL for patients with MS
Compliance with guidelines
Availability of drugs/ everyone has access to therapy
No 31% Yes 69% Source:
www.europeanmapofms.org
Fig 2. Taking Leadership – Multidisciplinary team perception
100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0%
There are many remaining opportunities to take leadership
• Specialist MS nurses currently take the lead in major areas of care including the professional development of other MS nurses
• Opportunities to lead in measuring and auditing care standards is a key area of growth potential in nearly every country
All UK Germany Italy Poland Finland Czech Rep
None of these Not part of MDT
Provider/mentor Patient advisor
Coordinator
Perceived intermediary
Perceived leader
There is a need for additional training and certifi cation
Fig 3. Do you feel that standards of care are well-maintained in your country?
Why no? Inadequate treatment
Inadequate information/ data/education
Inadequate financial support/inadequate economic assistance
Inadequate guidelines/ clinical standards
• Over half of nurses feel ‘very qualifi ed and informed’ to provide specialist advice and education to patients on symptom management with practical solutions
• One-fi fth of nurses do not feel they have adequate training and education to support them in their day-to-day role
• One-third of MS nurses do not feel that standards of care are well maintained in their country (Figure 3). Many see this as a result of inadequate information, data or education
Giving people with MS the best possible outcome – the recommendations
• Recognise nursing in MS as a specialty within Europe • Facilitate the sharing of knowledge, best practice and build collaborative expertise between countries • Standardise, benchmark and certify MS nurse training across Europe
The MS-NEED study group has begun development of a European consensus framework to defi ne the role and responsibilities of the MS nurse. This will aid consistency of care across all countries and facilitate the best possible outcome for people with MS in Europe.
In cooperation with:
References: 1. European Multiple Sclerosis Platform (EMSP) website.
http://www.ms-in-europe.org/ multiple-sclerosis/
index.php?kategorie=multiplesclerosis. Accessed October 2010.
MS-NEED: European Survey is supported by an unrestricted educational grant from Novartis Pharma AG. The acceptance of this grant does not constitute endorsement by the European Multiple Sclerosis Platform (EMSP) of any product of Norvartis. The EMSP does not approve, endorse or recommend any specifi c product or therapy but provides information to assist individuals in making their own decisions.
Fig 1. Prevalence of MS in Europe
140 - 180 110 - 140 80 - 110 50 - 80 10 - 50 No data provided
Key fi ndings: The role of the MS nurse is varied
• Many MS nurses are currently involved in activities that reach beyond traditional responsibilities
• Over one-fi fth of MS nurses believe they are viewed as leaders within a multi-disciplinary team (MDT), while approximately one-third of nurses believe they are a ‘day-to-day patient advisor’ (Figure 2)
• There is disparity in role perception between countries; most countries have a number of nurses who do not feel part of a wider MDT
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