Research news - November 2007
Open Door - November 2007 pages 4-5
- Managing choice
- Disease modifying treatments – start sooner rather than later?
- MS and work
- Genetics of MS
- Depression - is it all in the mind?
- Sunlight and Vitamin D
- Quality of life
Managing choice
In initial studies, a German research group found that 80% of people with MS wanted to take an active role in treatment decisions but had a poor knowledge of risks. The researchers, working closely with people with MS, developed decision aids to help people and their clinicians assess benefits and risks associated with two aspects of MS management:
high-dose steroids by mouth or injection or no steroid treatment for relapses
whether to begin, delay or refrain from disease-modifying therapies, as well as to change, to interrupt or to continue treatment.
With appropriate material to support discussions, people were able to participate fully in decisions relating to the management of their condition.
Heesen C et al.
Informed shared decision making in multiple sclerosis - inevitable or impossible?
Journal Neurological Sciences 2007;259:109-117.
Disease modifying treatments – start sooner rather than later?
Neurologists continue to debate when is the best time to start disease modifying treatments (beta interferon and glatiramer acetate). The BENEFIT study was set up to show if starting treatment after the first signs of MS, rather than waiting for a definite diagnosis, will reduce disability later on.
After a first episode of symptoms suggestive of MS, 292 people received beta interferon 1b (early group) and 176 received placebo (delayed group) for 2 years or until definite diagnosis of MS. At that point the placebo group also began taking beta interferon 1b.
After 3 years, 37% in the early group developed clinically definite MS compared with 51% in the delayed group; 16% in the early group and 24% in the delayed group had increased disability. The researchers concluded that starting treatment early does indeed reduce later disability. The study is due to continue for a further two years.
An editorial commenting on this study praised the quality of the research but pointed out that the effects were only modest and warned against over-optimistic interpretation of the findings prior to completion of the full five years of the trial. It concluded that this follow up study "should not be misconstrued as evidence for a treat-all approach."
Kappos L et al.
Effect of early versus delayed interferon beta-1b treatment on disability after a first clinical event suggestive of multiple sclerosis: a 3-year follow-up analysis of the BENEFIT study.
Lancet 2007;370:389-397.
Pittock SJ.
Interferon beta in multiple sclerosis: how much BENEFIT?
Lancet 2007;370:363-364.
MS and work
Four focus groups of people with MS, currently in employment, were set up to clarify what was needed to support them in the workplace. Two key areas were identified: managing performance and managing expectations.
Performance difficulties could be managed by either treating the symptoms, changing the environment or altering the demands of the job. People with MS highlighted the need for counselling to help them, and advocacy to help their employers have appropriate expectations.
Sweetland J, et al.
Vocational rehabilitation services for people with multiple sclerosis: what patients want from clinicians and employers.
Multiple Sclerosis 2007 Jul 10; [Epub ahead of print].
Genetics of MS
The collaborative efforts of several research groups in Europe and the US looking at the genetics of MS are beginning to bear fruit. Recently published results that were reported in the media suggest that two genes that control the body's immune system, IL2R-alpha and IL7R-alpha, may be associated with an increased risk of MS.
These genes are very common in the general population and the findings will not lead directly to new tests or treatments. It is thought that 50- 100 other genes may play a role in the genetic susceptibility to MS. However, researchers are now optimistic of making swifter progress in identifying further genes.
Not only will these studies ultimately help to identify genetic factors which contribute to the possibility of someone developing MS, they may also help to identify new areas of research for tackling the cellular changes that take place.
Gregory SG, et al.
Interleukin 7 receptor alpha chain (IL7R) shows allelic and functional association with multiple sclerosis.
Nature Genetics 2007;39(9):1083-1091.
Lundmark F, et al.
Variation in interleukin 7 receptor alpha chain (IL7R) influences risk of multiple sclerosis.
Nature Genetics 2007;39(9):1108-1113.
International Multiple Sclerosis Genetics Consortium.
Risk alleles for multiple sclerosis identified by a genomewide study.
New England Journal Medicine 2007;357(9):851-862.
Depression – is it all in the mind?
A recent review has drawn together evidence to support the view that clinical depression is an immune-mediated symptom of MS, rather than a psychological reaction to MS and is brought on by the same changes that cause other symptoms. Since depression in turn can have an effect on neurophysiological processes related to immune function, then treatment of depression may have a positive effect on MS disease progression.
Pucak ML, et al.
Neuropsychiatric manifestations of depression in multiple sclerosis: neuroinflammatory, neuroendocrine, and neurotrophic mechanisms in the pathogenesis of immune-mediated depression.
Dialogues in Clinical Neuroscience 2007;9:125-139.
Sunlight and Vitamin D
A topic which received media attention recently is the potential role of vitamin D and sunlight in the susceptibility to MS. Population studies note that the incidence of MS seems to increase with distance from the equator. Some have speculated that this may be explained by exposure to sunlight; vitamin D is produced in skin exposed to the sun. Alterations in vitamin D metabolism can influence immune function and may affect MS onset and progression.
79 pairs of identical twins, one of whom had MS and the other not, were asked to specify how much time they had spent in the sun as a child, going to the beach and playing team sports. The findings suggested that the twin with MS had spent less time in the sun as a child than the twin who did not have MS.
Islam T, et al.
Childhood sun exposure influences risk of multiple sclerosis in monozygotic twins.
Neurology 2007;69 381-388.
Quality of life
Quality of life (QoL) measures are increasingly used to monitor the social and psychological well-being of people with long-term conditions.
The aim of this study was to compare the QoL scores made by 40 people with multiple sclerosis with scores made by a close relative on their behalf (proxy). Overall, there was reasonable agreement between the scores made by people with MS and their proxies, but with a tendency for proxies to underestimate QoL. However, the results showed substantial disagreements between some people and their proxies suggesting that proxies underestimate the scores of people with a better QoL, and overestimate those with poorer QoL. These discrepancies show that the perception of QoL is very personal and that it may not be easy for another person, even someone very close to you, to rate your quality of life.
Tripoliti E, et al.
Quality of life in multiple sclerosis: should clinicians trust proxy ratings?
Multiple Sclerosis 2007 Jul 10; [Epub ahead of print].
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