Multiple Sclerosis Society
This bulletin provides a short summary of the research relating to MS
other neurological diseases in the following major scientific journals:
|Clinical Neuropharmacology||Jan/Feb 2003|
|The International MS Journal||March 2003|
|Nursing Standard||February 2003|
|Complementary Therapies in Nursing and Midwifery||February 2003|
|Current Treatment Options in Neurology||January 2003|
|Quality in Primary Care|
|International Journal of Therapy and Rehabilitation||May 2003|
|Health and Social Care in the Community||January 2003|
|Journal of Neurology, Neurosurgery and Psychiatry||June 2003|
The articles are organised according to topic as follows:
Current treatments in MS
Title: Treatment of Multiple Sclerosis and Related Disorders:
What’s New in the
Past 2 Years?
Author: JH Noseworthy.
Place of Report: Minnesota, USA.
Journal Reference: Clinical Neurology, 2003. Vol. 26, no. 1, pages 28-37.
There has been considerable interest in MS research during the past 2 years, and there have been an increased number of clinical trials as a result. This review focuses on some of the main advances in drug therapies for treating the different types and symptoms of MS. It also points to the need for long-term clinical trials to fully assess new treatments.
Interferon beta and Copaxone are the only drugs which actually modify the course of MS. They have been proven to reduce relapse rates for people with relapsing remitting and secondary progressive MS with relapses (methylprednisolone – steroid treatment - is often used to treat relapses, when they occur). However, their long-term effects and ability to reduce nerve fibre loss (responsible for permanent disability) are unknown. Side effects are also common, but generally tolerable.
Mitoxantrone is now used for people with “aggressive" MS, which is resistant to other treatment, but the lack of effective treatments for people with progressive forms of MS is underlined. The author highlights the benefit of new diagnostic criteria for MS, which allow earlier diagnosis, follow up and drug intervention. A willingness from the person with MS to start treatment before the development of symptoms is also addressed.
The issue of how MS progresses is addressed, with controlled long-term trials recommended to investigate the long-term effects of drugs (which are largely unknown) used to treat MS. The importance of encouraging people with MS, particularly progressive MS, where treatments are limited, to take part in potentially beneficial clinical trials is emphasised.
The author also reports on a new initiative based on the careful scrutiny of past histories of people with MS, which is currently being used to look for indicators or markers of how the disease and symptoms will progress. The aim of this is to reduce or avoid the need to use control, “no treatment” groups for comparison in clinical trials. This will increase the number of people receiving potentially beneficial treatment. A further advantage is to increase the speed with which beneficial new therapies can be tested and made available.
Comparison of primary and secondary progressive MS.
1. Case report: Clinical presentation of primary progressive multiple sclerosis 10 years after the incidental finding of atypical magnetic resonance imaging brain lesions.
Authors: GV McDonnell, J Cabrera-Gomez, DB Calne, DKB Li & J Oger. Place of Report: Vancouver, Canada.
Journal Reference: Multiple Sclerosis, 2003. Vol. 9, pages 204-209.
2. Review: Mechanisms of disability progression in primary progressive multiple sclerosis: are they different from secondary progressive MS?
Author: R Rudick.
Place of Report: Ohio, USA.
Journal Reference: Multiple Sclerosis, 2003. Vol. 9, pages 210-212.
The diagnosis of which type of MS a person has, is largely based on how the disease progresses. Relapsing remitting MS (RRMS) and secondary progressive MS (SPMS) are widely considered to be early and late stages of the same disease. Primary progressive MS (PPMS) however, generally lacks periods of relapse and remission and there are some scientific views that it is caused by a different mechanism. In this review the authors discuss the medical history of a person with an unusual case of PPMS, detected 10 years before the onset of any symptoms by brain imaging (MRI). The authors discuss the possibility of MS being active for long periods before the onset of any symptoms. They also highlight the difference between PPMS and SPMS.
PPMS tends to have an older age of onset and affects men and women more evenly (in comparison with the relapsing forms), with different MRI characteristics and less inflammation. This particular history of MRI scans showed increasing areas of damage consistent with RRMS (but with no symptoms), followed by the development of PPMS. The authors suggest from this report that PPMS is similar to SPMS without initial symptoms. This raises doubts as to whether there are different processes behind PPMS and SPMS.
In both PPMS and SPMS there is a greater degree of nerve fibre injury and loss than in other types of MS. The rate of progression of disability, after a certain stage, is described as similar in both PPMS and SPMS. The authors indicate that although mechanisms leading to a state of disability may be different, the mechanisms underlying disease progression in PPMS and SPMS may be similar.
The implications of this case on MS diagnostic criteria are addressed. The authors suggest that people with abnormal MRI scans be informed and closely monitored for initial symptoms to allow early diagnosis, and in relevant cases treatment, although therapies for PPMS are limited.
1. MS management across Europe and North America.
Title: Controversies across Continents: Report from the MS Forum Symposium, September 2002.
Place of Report: Baltimore, USA.
Journal Reference: The International MS Journal, 2003. Vol. 10, pages 32-33.
The personal views of doctors from Europe and North America were discussed at this conference. There was a lot of agreement on different aspects of MS, and the disease was found to be managed in a similar way across the continents. Four key areas were discussed:
Title: Benchmarking best practice in relapse management of multiple sclerosis.
Author: N Embrey.
Place of Report: Gloucester, UK.
Journal Reference: Nursing Standard, 2003. Vol. 17, no. 22, pages 38-42.
The standard and quality of care provided to people with MS generally, and during relapses, is very inconsistent. This report outlines the benchmarking process - the method of identifying and sharing best practice through collaboration between a wide range of health professionals and people with MS - of a group of MS nurses based in the midlands. The aim of this was to provide high quality, consistent care in the treatment of relapses.
The management of relapses is identified as an inconsistent. The importance of steroid management is highlighted, as are acknowledging the social, personal and employment concerns of people with MS. A strategy was devised for writing and implementing a “benchmark” (quality standard) for people with MS who receive steroid therapy during relapses. The stages of the strategy were:
1. Homeopathy in MS
Title: Homeopathy in multiple sclerosis
Author: TE Whitmarsh.
Place of Report: Glasgow, UK.
Journal Reference: Complementary Therapies in Nursing and Midwifery, 2003. Vol. 9, pages 5-9.
The use of complementary and alternative medicines (CAM) is common in the general population and widespread in people with MS. However, much of this occurs without consultation with health professionals, and without evidence of a beneficial effect.
Homeopathy is a type of CAM, with homeopathic treatments produced from a wide range of mostly natural substances. It is based on the principle that symptoms will be reduced if treated with tiny quantities of substances, which are known to cause the same symptoms. This review covers the use of CAM and homeopathy in MS and discusses some of the common homeopathic treatments used for MS symptoms.
This review highlights the fact that no form of CAM can cure or prevent the progression of MS. However, there are (unproven) claims from several homeopaths that CAM can reduce the frequency of relapses in MS. Anecdotal reports from people with MS have also claimed some homeopathic remedies can help with symptoms, including bladder and bowel symptoms, cramps, spasms and sensory disturbances. This review covers some of the specific homeopathic treatments often administered for these symptoms, including Causticum, opium, Cuprum metallicum, Phosphorus and Secale.
The review highlights the desire of many people with MS to receive some form of care that encompasses their whole person outlook, and is tailored to their individuals needs. However, the importance of not relying solely on homeopathy or CAM, and instead integrating it with conventional medical treatments is emphasised. The author also highlights the importance of only consulting a registered homeopath, who will be regulated by the Faculty of Homeopathy.
Title: Current Complementary and Alternative Therapies for Multiple Sclerosis.
Authors: AC Bowling &TM Stewart.
Place of Report: Englewood, USA.
Journal Reference: Current Treatment Options in Neurology, 2003. Vol. 5, pages 55-68.
The use of complementary and alternative medicine (CAM) is high in the general population and in particular, in people with MS. This may be due to limitations in conventional treatment options and the adverse side effects of various therapies used in MS. However, some of the existing information on CAM is biased, not evidence based and inconsistent. This review aims to provide evidence-based information on CAM supplements, relevant to MS.
Diet: No diet or dietary supplement has been definitely proven to modify the course of the disease. The available evidence for a number of dietary supplements is reviewed. An increased intake of polyunsaturated fatty acids (found in plant and fish oils) in the diet is the only factor to show slightly beneficial effects on symptoms in people with mild MS, in clinical trials. Dietary supplements and diet types, dosages, the main side effects and interactions with other medications are also listed.
Herbal Supplements: The lack of available information on the effects, side effects and interactions of herbal supplements is highlighted. Initial studies and anecdotal reports from people with MS have indicated cannabis might be beneficial in treating a variety of symptoms associated with MS. Results from large scale UK trials of cannabis on pain, spasticity and bladder function are currently being analysed. No other “herbal supplement” has shown a definite benefit for people with MS in controlled trials.
The authors highlight the lack of information and research on the possible adverse effects and interactions of many CAMs. The role of conventional healthcare professionals in providing objective CAM information and being open to discussion on CAM is highlighted as important. This is identified as helping people with MS gain access to accurate, evidence based information with which to make treatment decisions.
1. Health information on the Internet
Title: Web alert: current awareness updates.
Author: R Beard.
Place of Report: Brighton, UK.
Journal Reference: Quality in Primary Care, 2003. Vol. 11, pages 69-72.
There are an increasing number of Internet sites, which provide access and links to quality, evidence-based information about health-related research. Many of these sites also offer email alerts and newsletters. The author reviews some of the major sites currently available and gives details about who the site is aimed at, site registration procedures, information about content and policy and any “alert” or further information services offered (which can often be personalised).
The National Institute for Clinical Excellence (http://www.nice.org.uk): provides healthcare guidance for healthcare professionals and people affected by a wide variety of diseases. The website provides information about the Institute, what it does and the guidelines and guidance it produces. An electronic newsletter and alerts on guideline updates are available to registered users. E-guidelines: www.eguidelines.co.uk also provides information on current policies and guidelines although this service focuses mainly on primary care. It gives access to all issues of its journal and email alerts are available.
Health Net UK (http://www.healthnetuk.com/pages/index.htm): is a patient focused site containing health news, opportunities for patients to share experiences, information on various conditions, including MS, and details of self-help groups, with direct links on the site. The author does highlight however the large amount of personal information needed to register for access.
Cochrane Collaboration Consumer Network (http://www.cochraneconsumer.com): is an information site for patients and the public. It covers less information than some other sites but focuses on helping people understand health research and encouraging public involvement in its review process. It also contains access to the easily accessible Cochrane Library.
British Library – Zetoc: http://zetoc.mimas.ac.uk gives access to the British Library‘s general, electronic database of journal contents and conference proceedings. This is not healthcare specific, but includes indexed health care journals.
Ease of access to information is becoming ever more important and the number of organisations providing tailored information of high quality is increasing. These collections of evidence-based information are often useful in meeting information needs, without time consuming personal evaluation of individual websites. They also often allow the user to select alerts and services individually tailored to their preferences.
Title: Meeting the information needs of people with multiple sclerosis.
Authors: A Slade, A Tennant & H Ford.
Place of Report: Leeds, UK.
Journal Reference: International Journal of Therapy and Rehabilitation, 2003. Vol. 10, no. 5, pages 211-216.
A lack of information and any centralised source for such information has been reported to be a key problem for people with MS. Improving and increasing the availability of information can help to reduce anxiety, and give people a feeling “of control” over their disease. This results in an improved well-being and a reduced dependency. The aim of this study was to address this need for information, by developing a general information pack designed specifically for people with MS.
In depth interviews with people with MS with a range disability levels, carers and healthcare professionals formed the basis of the information pack. The pack was in a filofax format covering topics of MS symptoms, possible solutions and sources of available help. A second section identified local and national resources. A total of 43 people with MS provided initial feedback on the usefulness and quality of the pack. This pack was tested over an initial 6-month period, in Leeds.
Nearly two thirds of participants found the pack useful, and most thought it was easy to use. Nearly all participants reported that they would have liked to receive the pack or be made aware of it, around the time of being diagnosed. There was no link between type of MS or time since diagnosis and level of use. However, people with MS experiencing increases in their levels of disability were most likely to make use of the pack.
This study on the usefulness of an information pack addressed a key priority for many people with MS: to have access to more relevant information on MS. The information pack did address this need, and was reported as useful in the majority of people surveyed. The authors underline that this method of sharing information could be generalised to other local regions, and may be applicable for national use.
This research was funded by the MS Society of Great Britain and Northern Ireland.
Usefulness of support groups.
Title: Variables associated with attendance at, and the perceived helpfulness of, meetings for people with multiple sclerosis.
Authors: T J Peters, M Somerset, R Campbell & DJ Sharp.
Place of Report: Bristol, UK.
Journal Reference: Health and Social Care in the Community. 2003. Vol. 11, no. 1, pages 19-26.
People with long-term conditions, such as MS, are frequently advised to attend meetings or support groups with other people affected. However, there is little information about the characteristics of people either attending or benefiting from these meetings. This study used a postal questionnaire, distributed to a representative sample of people with MS, to determine the perceived value of meetings and the characteristics of someone likely to benefit the most.
Results showed that less than half of people who returned a questionnaire had attended a meeting for people with MS. Attendance was higher in people with progressive MS. Being over 45 years of age, having contact with a health professional in the last 12 months and having the ability and the means to access healthcare information, were all factors which increased the likelihood of a person attending a meeting.
Of those people who attended, a fifth found the meetings “not at all helpful”, but half found them at least “moderately helpful”. People who were mildly depressed were more likely to find meetings beneficial, possibly due to acknowledging other peoples (perhaps worse) disability.
The authors highlight the need to provide people with information at meetings for people with MS, to encourage attendance. The need for further research into which aspects of these meetings people with MS consider important and think should be included, was also emphasised. By targeting these aspects, people with MS are more likely to attend meetings, which are beneficial through being tailored to their needs.
Interferon beta for MS – experience in the UK
Title: Interferon beta in multiple sclerosis: experience in a British specialist multiple sclerosis centre.
Authors: BD Dubois, E Keenan, BE Porter, R Kapoor, P Rudg, AJ Thompson, DH Miller, G Giovanni.
Place of Report: London, UK.
Journal Reference: Journal of Neurology, Neurosurgery and Psychiatry, 2003. Vol. 74, pages 946-949.
Interferon beta (IFN beta) has been proven to reduce the relapse rate in people who have relapsing remitting MS (RRMS). This therapy is also thought to slow the rate of disability progression. However, long-term effects and side effects are largely unknown, and there are problems with compliance and cost. An additional problem is the development of “neutralising antibodies” (NABs), which occurs over time with this therapy. Development of these antibodies has recently been demonstrated to make the drugs less effective. This audit describes the implementation of IFN beta therapy for the treatment of people with MS in one London hospital.
This review reported relapse rate, the number of disabling relapses (requiring steroid treatment) and mobility before and after treatment, in order to determine the benefit of IFN beta therapy in 101 people with MS. The proportion of people with NABs after treatment onset was also assessed, as was the proportion of people fulfilling the current “stopping criteria” of the therapy.
The three beta interferon types (Avonex, Betaferon, Rebif) were found to reduce relapse rate to a similar extent, during an average treatment period of 26 months.
40% of participants fulfilled the predefined “stopping criteria”. These were progression to SPMS or two disabling relapses within 12 months. The policy of stopping treatment on the basis of relapses rate is questioned, as some people were still experiencing reductions in their individual relapse rates, compared to before treatment. Stopping criteria that acknowledges the pre-treatment frequency and severity of relapses, or is marked by progression to SPMS is suggested.
This audit reports on the first four years of treatment with IFN beta and acknowledges the small amount of participants involved. However, the importance of monitoring relapse rate and severity, as well as evaluating objective markers of disease progression, such as NABs, are emphasised for long term monitoring of IFN beta treatment and stopping criteria.
Alison Handford BSc
Marianne Miles Ph.D.
0208 438 0768
Copyright © 2003, Multiple Sclerosis Society