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This year saw a large attendance at the annual Schering nurses' symposium, with 450 delegates from 25 countries.

There were various topics covered at the conference, but the importance of the MS nurse for the care of the Multiple Sclerosis (MS) patient was stressed throughout. There were six speakers who covered topics such as the new McDonald diagnostic criteria for MS and the importance of interferon treatment.

K Wulf - Welcome address

Professor R Gold - New diagnostic criteria in MS - McDonald criteria

Dr D Leppert - Positioning of interferons

B Porter - Motivation and communication of MS patients

C Phair - Long-term experience in the treatment of MS patients at the Fairview MS-Treatment Center, Minneapolis, USA

Dr C Meyer - Management of MS patients - the Swiss experience

J Virág - Management of MS patients - the Hungarian experience

Klaus Wulf , from Schering AG, opened this year's symposium, with a brief introduction to Schering and a history of both the MS nurse and the annual nurses' conference. He stressed the importance of the MS nurse and the vital role they play in the treatment of the MS patient. He ended by reminding the delegates that the aim of this conference was for them to exchange opinions and experiences.

Professor Gold spoke about the new McDonald criteria for diagnosing MS. There is no definitive diagnostic test for MS, but a whole collection of criteria, which must be met for a definite diagnosis. These criteria are continually being updated and improved.

The first criteria were outlined in 1965 and there has been much progress since. The aim of McDonald et al. was to integrate magnetic resonance imaging (MRI) into the criteria and adapt the criteria for use in a non-clinical trial situation.

Overall, the review was successful. However the following changes have been recommended:

• the integration of MRIs into the criteria.
• the re-classification of the examination outcome as 'MS', 'not MS' or 'possible MS'.
• the re-defining of a relapse as a second event showing classic MS symptoms, lasting for at least 24 hours and occurring within 30 days of the previous event
• the re-definition of PPMS as continued progression over 1 year.

Are these new criteria important for patients? The new criteria may allow earlier diagnosis of MS after only one relapse. In turn, this may allow the treatment of MS at an earlier stage, and thus prevent much of the inflammatory damage that occurs early on in the disease can be prevented

Dr David Leppert introduced the importance of the interferons, and their place in the treatment of MS in relation to other available therapies.

Before 1992 the only treatment options available for MS were steroids and immunosuppressants, both of which were only partially effective and had serious side effects. This changed in 1992 when interferon beta-1b, the first product to show a beneficial effect on the progress of relapsing-remitting MS (RRMS), was introduced in the USA. Other therapies that have since become available include other interferons and an anti-inflammatory preparation.

Dr Leppert presented data showing that interferon beta-1b can modify disease course independently of the time that treatment is started. So, as well as RRMS secondary progressive (SPMS) can also be treated with interferon beta-1b. Four studies have shown that interferon beta-1b had a positive effect on inflammatory disease activity.

At the moment all patients taking interferon beta-1b take the same dose. However, research suggests that this is not effective and it may be more successful for patients to take either a slightly higher or lower dose. Dr Leppert presented data from another clinical trial, comparing every other day treatment with interferon beta-1b with weekly treatment with interferon beta-1a. This trial demonstrates that dosage and frequency are very important and a higher dose and frequency can be more efficient. There was a 50% reduction of disease progression in those people taking the interferon beta-1b.

The impact of interferon beta-1b treatment on long-term clinical outcome is still uncertain. Dr Leppert gave an introduction about two studies, which aim to investigate the effects of early treatment with interferon beta-1b on the long-term outcome of MS.

Bernadette Porter is a clinical nurse specialist who spoke about communication and motivation, both between the nurse and their patients and between nurses themselves. She began by emphasising that the old style of MS management, 'MRI and goodbye', in which patients received little or no support from healthcare professionals, is obsolete.

The role of the MS nurse is seen by Ms Porter as helping the patient to balance their disease with a 'normal' life. The MS nurse must draw together the neurologist, the patient and the community through education of the individual. They can do this in a variety of ways and using a variety of tools. These include:

Listening, not talking. Nurses must observe in others their words, tone and body language and must make an assessment of them at that time, giving the right information at the right time - as well as using appropriate words, tone and body language.

Adherence. Nurses should try and promote 'adherence' in their patients. This is a partnership and therapeutic alliance, which encourages patients to remain on their treatment. The MS nurse should empower the patient, as well as encourage, support and motivate them. They can do this by allowing them to choose goals that are important to them, while giving them realistic expectations.

The 'expert patient' program. The growing number of people with chronic diseases, such as diabetes, HIV, asthma, rheumatoid arthritis and MS has led to the evolution of this program. It aims to educate patients about problem solving and disease management, with a view to them having decreased symptom severity, pain and increased life satisfaction. This program is already effective in asthma management.

Ms Porter ended by stressing that MS nurses have a pivotal role in helping patients manage their disease, and that they can help MS disease management move forward further still.

Cindy Phair has long been involved with the Fairview Medical Center in Minneapolis, which opened in 1977. Fairview was the first centre in the United States to offer comprehensive MS care. Ms Phair gave an insight into the way their team, which includes physicians, nurses, various therapists, counselors, neuropsychologists and a chaplain, work together to provide long term care for their three thousand MS patients. Their strategy is made up of three components; managing not only the disease but the symptoms and the person too.

In order to manage the disease, patients at the Fairview Medical Center are treated with immunomodulating drugs, such as interferons, anti-inflammatory drugs and immunosuppressents.

The symptoms they focus on are a direct result of demyelination, such as weakness, pain, fatigue and cognitive impairment. They also aim to treat the complications and the psychological symptoms that can accompany these primary symptoms, such as problems at work. The theory is that if the primary symptoms are managed effectively, then the other complications and psychological side effects never occur - hence this is managing the person.

Managing the person is also achieved by rehabilitation. Rehabilitation allows the patient to remain as independent as possible in an environment of their choosing, and can be either restorative or maintaining. Restoration rehabilitation is specific and time limited and is generally used when a patient suffers a relapse or acute flare-up; whereas maintenance is non-specific, long-term and aims to prevent further flare-ups and complications. Examples of maintenance rehabilitation are swimming, gentle walking and stretching exercises.

Ms Phair stressed the importance of teamwork for effective patient management, not only at the centre, but at work and at home too. She reminded the delegates how important nurses are in her team and how increasingly they are becoming the primary team member.

'The Swiss Experience' was the topic of Dr Christian Meyer's speech. In Switzerland between 60 and 70% of MS patients are treated on an out-patient basis at a neurologist's practice. The neurologists play a very active role in patient management. However, Dr Meyer feels that the support of MS nurses is essential for this type of out-patient management to work, as patients need continuous education and support.

Dr Meyer used a triangle metaphor to symbolise the place of the MS nurse in the Swiss system. They must stay close to the patient and try to overcome any problems. These problems are not only on the part of the patients, but the families, physicians and nurses too. They must also maintain a connection with the patient and physician. To facilitate this, the nurses are very flexible and will visit the patients at home, rather than a centre or hospital.

Last year Schering, Switzerland, established an initiative called Foundation for Integrated Therapy Systems (FITS), with the aim of improving the network between patients, physicians and nurses. Trained insurance specialists are also in regular touch with the patients, as part of FITS, to help them deal with the bewildering world of health insurance. FITS has been very successful in improving satisfaction and quality of life, improving social contacts and lowering the drop-out rate of interferon beta-1b users. After over seven years experience with interferon beta-1b, Switzerland has the lowest drop-out rate in Europe, as patients are motivated to continue with the therapy.

Jánosne Virág was speaking on the 'Hungarian Experience' in MS care. She began with a background about MS in Hungary. There are between 60,000 and 70,000 people with MS in Hungary and 325 are currently being treated with interferon beta-1b, which was registered in Hungary in 1996. Patients are reviewed and evaluated by a neurologist every three months and they partake in subjective self-evaluation. Both evaluations have shown that interferon beta-1b therapy has a positive effect on disease progression. Only 15% of patients reported disease progression after three years. Interferon beta-1b has also had a positive effect on the patient-neurologist-nurse relationship, both intensifying and heightening it.

The Autoject ^® has been widely used in Hungary since 2001, with 180 people currently using it. The patients administering interferon beta-1b with this technique have reported favourable findings. Over 50% reported a positive effect on their side effects, 58% had a significant and positive change in the pain of injection and 100% claimed a benefit with using this technique compared to the standard subcutaneous injections.

Ms Virág feels that, since the introduction of Interferon beta-1b and the Autoject ^® , the care of MS patients in Hungary has improved greatly. The relationship between patients and their healthcare professionals has intensified, the disease has stabilised in many patients and many people now have a more positive outlook.

Following each presentation individual questions were raised from the audience. You can read the highlights here.

The information on this page was last updated/verified on:

August 23, 2002

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