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Multiple Sclerosis
Comprehensive Care in Multiple Sclerosis – A Patient-centred Approach
a report by
June Halper
Executive Director, Consortium of Multiple Sclerosis Centers (CMSC)
Multiple sclerosis (MS) is a complex neurological disease with a far- people with MS because it was believed that intercurrent viral
reaching impact on patients and families throughout a lifetime with the infections may trigger MS attacks and beta-interferons might have an
disease. Its hallmark is uncertainty; it has physical, emotional, financial immunomodulating effect on this process.
3
During the same period
and psychosocial implications throughout its course. Care in MS has there were investigations into the use of a synthetic polypeptide,
evolved from a wait-and-see attitude during the mid-1900s to a more co-polymer I, to modify MS relapses. As a result of four pivotal trials
proactive stance with the advent of effective disease-modifying and that demonstrated effective outcomes in relapsing forms of MS,
symptomatic therapies. Therefore, interactions with the healthcare Betaseron was approved for use in the US in 1993; Avonex and
community have become more intense and increasingly frequent for Copaxone entered the marketplace for relapsing–remitting MS in
patients and their providers. Today, patients are impelled to make 1996; and Rebif, although approved in many countries throughout the
emotionally charged decisions regarding their healthcare virtually from world, finally entered the US market in 2002.
the time of their diagnosis and with each change in their condition.
In 2008 Extavia (interferon beta 1β) was approved for use in Europe, and
The inflammatory pathology of MS includes damage to the myelin and it may enter the North American market in 2009. A chemotherapeutic
axon in the white matter of the brain and spinal cord.
1
Recently, there agent, mitoxantrone, became available for worsening relapsing forms of
have been reports of grey matter involvement resulting from different MS in 2000. This treatment, as opposed to the earlier therapies, is
pathological mechanisms that have been shown to contribute to long- administered by infusion, whereas the others are via self-injection. As
term disability in MS.
2
There are implications of MS that involve not opposed to a philosophy of care during the early part of the 20th century,
only the symptoms but also the adjustment of living with a chronic a new model of care included a great deal of self-management by the
illness that may bring disability, lifestyle changes and significant patient and family. Adverse-effect strategies, injection technique, follow-
alterations in quality of life. With the advent of disease-modifying up laboratory work and self-monitoring were added to the responsibilities
therapy, patients with relapsing forms of MS must follow treatment of the person diagnosed with MS. Issues related to adherence and factors
regimens, monitor their condition, adapt to changes and regularly related to quality of life gained increasing importance in MS care. During
make decisions about whether they need to seek care or are able to the early part of the 21st century, natalizumab was also approved for
handle their problem on their own. Functioning as a self-care manager relapsing forms of MS. Administered by infusion, natalizumab has a
requires a high level of knowledge, skill and confidence. different safety profile from the injectable agents, and some people view
the convenience of infusions versus self-injection as a viable option. Thus,
The History of Disease Modification in Multiple Sclerosis MS patients currently have seven approved treatment options that can
In the 20th century, treatment focused on symptomatic care, as well support hope for the future and control of their disease.
as relapse management. The use of corticosteroids was the hallmark of
relapse management, although there was no evidence that this It is obvious that healthcare professionals worldwide are now presented
therapy brought any long-term permanent benefit. During the 1980s, with challenges that include extensive patient and family education about
researchers began studying interferons as a possible treatment for these therapies, assisting patients to start treatment, sustaining
compliance/adherence to treatments and evaluating outcomes through
clinical assessments and other methods to appraise treatment response.
June Halper is Executive Director of the Consortium of Multiple Sclerosis Centers (CMSC), a
position she has held since 1992, and served as the Consortium’s President from 1995 to 1997.
In addition, these patient and family education efforts include provision
A certified adult nurse practitioner who has specialised in multiple sclerosis (MS) since 1978,
of accurate information and education, presenting reasonable
she was a founder of the MS Center in Teaneck, New Jersey, and served as its Executive
expectations and outcomes of therapy, sustaining the patient’s belief in
Director until 2008. Ms Halper has published and lectured extensively on MS and its
ramifications. She chaired the first Multiple Sclerosis Nurse Specialist Consensus Committee’s
his or her treatment, promoting adherence and preventing premature
development of a monograph on the nurse’s role in adherence to complex protocols, the impact
discontinuation of an effective treatment for more ‘convenient’ types of
of cognitive impairment in MS nursing care and the nurse’s role in the patient’s and family’s
quality of life. She is a member of the American Academy of Nurse Practicioners (AANP), a
administration. It is this author’s opinion that these challenges will
Founding Director of the International Organization of MS Nurses (IOMSN) and the recipient of continue with current choices and will be increased with the introduction
the IOMSN’s first June Halper Award for Excellence in Nursing in Multiple Sclerosis. She was
(in the future) of an approved oral medication for MS.
inducted as a Fellow into the American Academy of Nursing in November 1999. In 2000, Ms
Halper spearheaded the establishment of the Multiple Sclerosis International Credentialing
Board, which developed the first international certification examination in MS nursing, first
Models of Care in Multiple Sclerosis –
offered in June 2002 and bi-annually thereafter. As Executive Director of the CMSC, in 2004
she initiated the first certification examination for multidisciplinary MS specialists.
The Comprehensive Care Approach
MS care has changed a great deal in the late 20th and early 21st
century. The most recent model, the comprehensive care approach to
72 © TOUCH BRIEFINGS 2008
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