The Betaplus(R) Programme
What's in for you
When interferon beta-1b was first licensed in the USA in 1993 for the treatment of relapsing–remitting multiple sclerosis (MS), a significant number of patients withdrew soon after starting therapy. Often, they had not been warned that they might experience temporary but inconvenient side effects such as flu-like symptoms, injection site reactions and fatigue. Many of the patients who withdrew from therapy had not been given any educational literature, counselling or training in injection technique. However, 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.
Injectable treatments such as Betaferon® generally require active participation by both the patient and family. Patients starting on Betaferon® treatment need help with giving regular injections. That is why the Betaferon Nurse Programme has been established. Although Betaferon® is supplied in easy-to-use, pre-filled syringes to be used with or without the auto-injectors Betaject comfort® or Betaject light® (where available) there are still important points about where, when and how to give the injections that need to be understood.
In some countries teams of nurses are available who visit patients receiving Betaferon® and their families in their homes to offer training and support in giving their treatment. Once the Betaferon nurse is notified of a new patient she:
- Establishes contact with the patient
- Visits him or her and their family at home to train them in injection technique
- Continues to support them during treatment by telephone, if wished, on a regular basis
- Liases with the patient's GP
- Is available at all times for help and advice.
Advice offered
The nurses also mediate between neurologist on one side and patient on the other side, because they speak the “same language” as patients, and can explain difficult medical matters to the patient in his or her own words.
The typical advice offered by Betaferon nurses includes:
- Where, when and how to inject Betaferon®
- Dealing with possible side effects
- Realistic expectations of the effectiveness of treatment
- The need to continue with treatment as long as the doctor thinks that it is worthwhile.
Experiences from other countries
Around the world, nurses specialising 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 patients and provide support for 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 organise patient workshops.
In Baltimore, USA, they work with clinical trial participants as well as private MS patients.
In Finland there is an association for MS nurses, which was founded a few years ago. 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. The name of this association is Suomen MS-hoitajat ry. The association hosts many different activities during the year and works close together with the Finnish MS Society.
In Italy a Nurse Programme has been newly developed. Since Summer 2002 patients from whole of Italy can be contacted by a specialised nurse.
If you have questions or want to know if there is a Nurse Programme in your country please ask your neurologist.
