MS
SPECIALIST NURSE
MS
SPECIALIST NURSE
THE ROLE OF THE MS SPECIALIST NURSE
Authors: Christian Meyer,1 Eilish Moran,2 Eija Luoto,3 Kathleen Conway,4
Affiliations: 1Specialist for Neurology (Private Practice), Baden, Switzerland; 2HE Clissman, Dublin, Ireland; 3Masku Neurological Rehabilitation Centre, Masku, Finland; 4University of Maryland, Baltimore, USA
| Address for correspondence: | This article is the result of a co-operative venture. All correspondence should be addressed to the Publisher |
Received:30
December 1997
Accepted:17
April 1998
When interferon beta-1b became the first licensed treatment in 1993 for people with relapsing–remitting multiple sclerosis (MS) in the USA, some patients withdrew soon after starting therapy. Often, these patients had not been forewarned that they might experience temporary but inconveniencing side-effects, such as flu-like symptoms, injection-site reactions and fatigue. Many of the patients who withdrew from therapy had not been given educational literature, counselling, or training in injection technique. Conversely, neurological centres that had participated in clinical trials were better prepared to deal with the needs of new patients, and most such centres offered patient education and counselling about interferon therapy from the outset. In general, these services were managed by nursing staff rather than neurologists.
Around the world, nurses specializing in MS work in different ways, to suit national healthcare needs, or to fit the working patterns adopted by the neurological clinics in which they are based. For example, in a sparsely populated country such as Ireland, MS patients often have long distances to travel for neurological treatment. To overcome this, pharmaceutical companies sponsor MS nurses who travel to neurologists and provide support to MS patients on interferon therapy in their own homes. In Switzerland, MS specialist nurses are hospital-based but, like the nurses in Ireland, they also make home visits to patients on interferon therapy. In addition, the Swiss MS specialist nurses organize patient workshops. In Baltimore, USA, they work with clinical trial participants as well as private MS patients; MS nurses in Finland have an interest in the disease but are based in general neurological clinics, treating patients with a variety of neurological conditions.
This article, written from presentations made at the first International Workshop for MS specialist nurses in Berlin, Germany, in January 1998, describes different models of MS nursing in more detail. It provides all neurologists, whether they have many MS patients or few, with an example of how the MS specialist nurse's role can be adapted to suit national or local neurological practice and meet patients' training and support needs. There is a second article on nursing in this issue, by Rosie Wilson (pages 30–34), giving a detailed explanation of one specific nursing venture, the MS Partnership Programme. This programme operates across the UK and is the largest model of MS nursing to be implemented nationally.
Dr Christian Meyer
Baden, Switzerland
In this model, the neurologist
retains total control at the diagnostic stage, and the nurse becomes involved
only when the patient decides to go on interferon beta-1b therapy.
In Switzerland there were 10000 recorded cases of MS in 1997, of whom 3000 had relapsing remitting MS and 1000 of these were receiving interferon-beta therapy. Six neurological centres across Switzerland, including the Baden clinic, employ MS specialist nurses.
Interferon beta-1b became available for people with MS in Switzerland in early 1995 and the therapy has been offered to all MS patients who meet the clinical criteria. For the vast majority of these patients, the prospect of therapy has replaced negative fears with hope. However, particularly in the early stages of treatment, the patients often need intensive support from specialists with a keen interest in MS and a positive, working knowledge of the therapies available. In Switzerland the MS nurse focuses on training and support for people on interferon beta-1b therapy and is not involved in the care of all MS patients.
The Baden clinic treats all suspected cases of MS on an out-patient basis. On the initial consultation the neurologist undertakes tests including magnetic resonance imaging (MRI), cerebrospinal fluid (CSF) analysis and neurophysiological examination. If test results confirm the presence of MS, the patient is given the diagnosis and is invited to bring a partner to the next appointment, where they receive more detailed information. If appropriate, therapies are discussed and the patient is left to consider the options before the next consultation. Patients see the MS specialist nurse only when they decide to start on interferon beta-1b therapy.
This model of continued care usually leads to the development of an excellent doctor–patient relationship. The doctor is decisive and honest in the diagnosis, advice and action that he offers the person with MS. The patient receives realistic expectations about interferon therapy (if it is deemed suitable for them) but are given reasons why such therapy is not appropriate if they do not meet the criteria for treatment. The patient has an active role in their own clinical management.
Although the MS nurses at the Baden clinic focus on providing support during the initial treatment phase, they remain involved on an on-going basis. The regular contact between patient and nurse allows their relationship to develop and many patients choose to discuss aspects of their condition other than therapy with the specialist nurse, who will refer the patient onto other health specialists such as physiotherapists and counsellors as appropriate.
There have been very few drop-outs with this system as the nurse helps the patients to understand and manage the symptoms of MS, and motivates them to stay on therapy.
Eilish Moran, Training Nurse
in Ireland
Training nurses are employed
by Schering to offer specific support to patients on interferon beta-1b therapy.
There are 3.6 million people in the Republic of Ireland, and 5000 of them have MS. Most MS patients are treated in three neurological centres, staffed by 13 neurologists. Just over 2000 MS patients in Ireland have relapsing–remitting MS, and 250 of these are on interferon beta-1b. Two MS specialist nurses are contracted by Schering as 'Interferon beta-1b Training Nurses' to support the care of patients on this therapy. They also liaise with the MS Society in Ireland, and local support groups, to provide information and advice on interferon beta-1b therapy.
In Ireland, the neurologist submits a new prescription for interferon beta-1b to the Department of Health, who pay for the drug and then contact the patient's pharmacist. The pharmacist orders the drug from Schering, and Schering passes details to the training nurse. The transfer of patient information between parties in this way is legal in Ireland and is not seen to affect confidentiality. The Training Nurse contacts the patient and arranges an initial meeting. Experience has shown the training nurses that patients are more comfortable about starting treatment when the preliminary discussions have taken place in their own homes.
The training nurse requests that a family member or friend join the patient for all consultations. There is a strong community tradition across Ireland and it is common for others to be closely involved in all aspects of the patient's care. Training nurses educate the patient and their family member or friend in all aspects of interferon beta-1b therapy, including drug storage, reconstitution, asepsis, injection technique and site rotation, and the training culminates in the patient administering the first injection in a neurological out-patient clinic. The training nurse then contacts the patient's neurologist, family doctor and community nurse, which provides the patient with the security and knowledge that any medical person with whom they are in contact is soon aware that they are on interferon beta-1b. Although the Training Nurses are responsible for all routine interferon-related aspects of the patient's care, it is often a great source of confidence to other health professionals that an MS nurse is focusing on the treatment-related aspects of interferon beta-1b therapy.
Follow-up support
Support is intensive during the first 3 months, although training nurses continue to see patients whenever required, regardless of the length of time on therapy. The training nurses share a 24-hour, 7-day on-call support service, although it is rare for a patient to call out-of-hours with a routine query because the training is well supported through written information.
Most patients on interferon beta-1b therapy have their greatest need for reassurance and advice in the hours after their first injection, at this time the nurses will automatically keep in close telephone contact with them. Those who are well supported by the training nurse when they start interferon therapy are highly unlikely to withdraw through compliance or side-effect problems over the long-term.
With any interferon treatment, a minority of patients will experience short-term side-effects, particularly during the initial treatment phase. Therefore, a key role of the nurse is to provide information and support to the patients so that they are more prepared if any symptoms occur. Over the long-term the nurse offers encouragement and checks that the patient is rotating injection sites, storing and injecting the drug correctly and following a good aseptic technique. Such support, which is extended to the patient's family and friends as appropriate, helps to minimize treatment reactions, and the nurses have reported that patients receiving this kind of support tend to experience fewer side-effects and problems with compliance.
Patients understand and accept that the training nurses are there just to support their interferon treatment. The Training Nurse often has more opportunity to talk and listen to the patient than is the case with other carers, however, and the intensity of the patient–nurse contact over the initial months often means that they can be the first to identify other potential problems. The Training Nurses are careful to refer queries to the appropriate health professional as necessary and by doing so they provide an important link between the patient and all health professionals involved in their care, whether or not this is directly related to MS.
The Training Nurse programme for patients on interferon beta-1b has been a very successful initiative across Ireland since around 1993. It demonstrates how, even in a sparsely populated community, there can be good communication links between people with MS and the professionals involved in their care.
Eija Luoto
Masku Neurological Rehabilitation
Centre, Finland
The mixed experiences of neurological
nurses in Finland reinforce that adequate support for the MS patient can be
given only when health professionals are properly trained.
Across Finland, up to 6000 people in a population of 5 million have MS, an estimated 800 of them with the relapsing–remitting form. Interferon beta-1b was registered in Finland in May 1996 and is prescribed free to suitable patients through hospital neurology clinics. There was little time to train health professionals before interferon beta-1b was licensed, and 9 months after it was registered, a questionnaire was sent to 22 key neurological units across Finland to ascertain how interferon treatment was being organized. The results showed that 277 patients across 20 hospitals were receiving interferon beta-1b. Interferon beta-1a was used in nine patients, although the drug was not licensed for use in Finland at that time.
In general, patients received training (two sessions lasting, on average, 97 minutes each) from a neurological nurse before administering the first interferon injection in the out-patient clinic. Nurses were always responsible for patient training, and most hospitals devised their own training programmes. In addition, Schering Finland had organized four meetings attended by 70 MS nurses in the run-up to the launch of interferon beta-1b to ensure that they had advice on how to counsel and start people on interferon therapy.
The nurses in Finland had, in reality, very limited time to focus on learning the new skills involved in supporting the patient on interferon beta-1b. Unlike the model of nursing followed in Ireland, the Finnish neurological nurses were learning how to train and treat patients on interferon while undertaking a wide range of other duties; no nursing professional had a specific focus on MS.
Although the interferon support programmes differed slightly between hospitals, all recognized the importance of providing specialist care during the initial weeks of therapy, when patients have more questions and are at most risk of experiencing side-effects. The Finnish questionnaire results showed that it was common for the patient to telephone their nurse after 1 week (three injections) to report on progress. The patient then visited the clinic monthly for the first 3 months after commencing therapy; thereafter, appointments were scheduled every 3–6 months, depending on the patient's individual requirements, but they could contact the nurse at any time if they had any concerns. Within the first 3 months, the questionnaire results showed that patients telephoned the nurse an additional 5–6 times, often to report side-effects, injection-site reactions or problems with injection technique.
Although 50% of the nurses felt satisfied with the information and training that they had received from their own neurological units before they treated new patients on interferon, over 30% of them received no education in advance of the drug's launch. These nurses felt that they were very poorly informed about treatment prior to working with the patients and that it was extremely difficult to teach patients how to self-administer interferon successfully when they themselves lacked confidence and understanding about the therapy.
The nurses also reported that to learn about interferon therapy in a satisfactory manner, they needed time and space allocated away from the neurological clinic. They also commented that the time they devoted to supporting and training the patient seemed to have a close correlation between the patient's motivation and level of confidence in the treatment. Teaching of the patient's other family members was also considered to be critical to therapeutic success.
The current situation
By early 1998, 341 Finnish patients in 27 neurological centres were on interferon beta-1b. Across 16 of these centres, 80 patients were on interferon-1a.
The questionnaire results were distributed across Finland and some modifications were made to the training and support of patients on interferon beta-1b. Every major neurological unit in Finland now has at least one nurse with specialist knowledge about interferon therapy, who is supported by two other nurses who can train and work with patients receiving treatment. Nurses in Finland are currently discussing whether to establish an association for MS Nurses and a clinical nurse speciality in neurological nursing. The Finnish nurses specializing in MS have also developed models for optimum care of patients which comprise a set of standards created to motivate them, teach them the principles behind interferon therapy and provide them with the practical skills of self-care.
Kathleen Conway
University
of Maryland, Baltimore, USA
Nurses at the Maryland Center
for MS have been developing patient education and support programmes for patients
on interferon beta-1b since the mid-1980s
The Maryland Center for MS at the University of Maryland in Baltimore, USA, was established in 1981 as a treatment and research centre for persons with MS. Approximately 1000 patients are followed in the clinic; 200 of whom are currently on an immunomodulating therapy (interferon beta 1-b, interferon beta-1a or glatiramer acetate).
The MS Center was a clinical research site for both the pilot trial and pivotal Phase-III trial of interferon beta-1b. The pilot trial began in 1986, the Phase-III trial in 1988. During the course of these trials, the MS Center staff learned about interferon therapy in tandem with the patients. The study patients' experiences with initiating study drug and coping with side-effects demonstrated the need for a multidisciplinary approach to patient care. The nurses proved to be key members of the team. They educated, counselled, and supported the patients throughout the trial period.
When the US Food and Drug Administration approved interferon beta-1b for use in relapsingremitting patients in 1993, the Center nurses developed a training programme to educate all eligible patients about the new medication and how to administer it. The Baltimore training programme focuses on three key areas:
Appropriate patient selection
At present, interferon beta-1b is licensed for use only in persons with relapsingremitting MS. The nurses assist the Center physicians in the identification of suitable candidates for interferon. While MS status and relapse history are key selection criteria, the Baltimore nurses focus on patients' motivational levels and support systems. It is best if the patient has a strong desire to be on the medication. The method of drug administration, side-effects, and the need for long-term use may affect patient compliance. In addition, the Center's clinical trial experience showed how important a supportive care partner (family member or friend) is in fostering the patient's commitment to therapy.
At the Baltimore Clinic, the patient will usually discuss interferon therapy in some detail with the nurse before they meet the neurologist. The information gathered is then used by the physician in determining patient selection.
Patient Education
The patient and their care partner attend an individualized training session given by the nurse where they learn the principles and benefits of interferon therapy, drug preparation, injection technique, side-effect management, and follow-up care. The session usually lasts 2 hours. Prior to this session, Berlex Inc. (the USA division of Schering AG) supplies each patient with a training kit that is a useful adjunct to the Clinic's educational programme. The session culminates in the patient administering their first dose of interferon. For this reason, most training sessions are scheduled on Fridays so the patient has the weekend to cope with any side-effects.
Patient education is a sharing of information. It is important for the nurse to understand the patient's experience of MS and the patient's and family's preconceptions about interferon therapy before initiating the formal training sessions. Having this information enables the nurse to explain interferon therapy in a way that bridges science with the patient's individual concerns.
After initiation of interferon therapy, nurse–patient communication is an ongoing process. In Baltimore there is a nurse on call at all times to offer advice and assistance. The nurse encourages patients to call the day after the first injection, and thereafter if they have any problems. These measures are undertaken to reduce patient anxiety, reinforce realistic expectations of therapy, and to promote compliance. Follow-up appointments are scheduled 3 months after the first injection, and then every 6 months. There are no home visits.
Side-effect management
The training session includes detailed information about the common side-effects of interferon beta 1-b. Having this knowledge gives the patient a sense of control and helps reduce anxiety. Emphasis is placed on the fact that most side-effects resolve over time. The MS Center follows specific guidelines for managing each side-effect.
The nurse's primary concern is to minimize potential problems whenever possible. For example, it is important to periodically review the injection technique and site rotation with the patient. If a serious injection-site reaction does occur, the Baltimore Center refers the patient to a dermatologist for evaluation. Patients are always encouraged to call the MS nurses with questions or concerns about the therapy, side-effects, or MS symptoms.
Interferon therapy is a long-term
treatment with common side-effects. Commitment to therapy depends largely on
the development of a strong, trusting relationship between the patient, physician,
and nurse. Whether clinic- or community-based, treating all persons with MS
or just those on interferon therapy, the MS nurse specialist has become an essential
member of the neurological team.