Research news - August 2008
Open Door - August 2008 pages 4-5
- MS symptoms - which cause most concern?
- Experiences of diagnosis and treatment
- Ultraviolet radiation and MS
- Disease modifying drug treatment: sooner or later?
- Laquinimod for relapsing/remitting MS
- Falls and MS
MS symptoms - which cause most concern?
Two separate studies have asked people which MS symptoms are most important.
In the first study, a group of 145 people were asked to score themselves for how much they worried about their health. Higher levels of anxiety about health were most often found in people with the invisible symptoms of pain and depression; in a subset of people who had had MS for more than 11 years, pain and depression continued to be associated with health worries, but walking aid use and fatigue were also linked to greater anxiety about health. The researchers conclude that invisible symptoms cause greater concern than visible ones and recommend a greater level of attention to screening and treatment for these symptoms.
In another study, researchers were looking for ways to evaluate the effectiveness of new treatments which would be more meaningful to people with MS. They asked 84 people with MS for less than five years and 82 with MS for more than 15 years to grade aspects of physical function and assessed their actual disability. Walking was given the highest priority in both groups followed by vision and cognition, particularly in longer lasting MS. Experience of a disability did not influence these priorities. The researchers point out that walking ability is, from the participants' perspective, an important measure in clinical trials and suggest that vision should be taken more into account in studies.
It is encouraging that notice is being taken of the actual experience of people living with MS to focus on the management of symptoms which cause the most concern and to identify ways to measure new treatments which reflect the priorities of people with MS.
White CP, et al.
Invisible and visible symptoms of multiple sclerosis: which are more predictive of health distress?
Journal of Neuroscience Nursing 2008;40(2):85-95,102.
Heesen C, et al.
Patient perception of bodily functions in multiple sclerosis: gait and visual function are the most valuable.
Multiple Sclerosis 2008 May 27. [Epub ahead of print]
Experiences of diagnosis and treatment
24 people with MS were interviewed about their experiences of being diagnosed with MS, the information they were given at this time, subsequent treatment and its impact on their lives. The analysed interviews showed that both historically and currently, many people with MS experienced distress because of lengthy delays in diagnosis and lack of support at this time. Some participants expressed anger about the way they had been given their diagnosis. The majority felt they had received insufficient advice or information about managing MS and had sought out this out for themselves. Provision of information and support may have improved in recent years, although lack of support for those awaiting diagnosis is still apparent.
Edwards RG, et al.
Experiences of diagnosis and treatment among people with multiple sclerosis.
Journal of Evaluation In Clinical Practice 2008;14(3):460-464.
Ultraviolet radiation and MS
People with MS in Newfoundland and Labrador in Canada were sent a survey requesting information about where they had lived from birth to diagnosis. This was compared with levels of ultraviolet B (UVB) radiation gathered between 1998-2002. A statistically significant relationship was found between incidence of MS and levels of UVB - lower levels of MS incidence were associated with higher levels of UVB and vice versa. This was strongest for the place someone lived in their first year of life and declined when subsequent years were examined up to age ten. The researchers concluded that UVB exposure may contribute to the causes of MS.
Sloka JS, et al.
The relation of ultraviolet radiation and multiple sclerosis in Newfoundland.
Canadian Journal of Neurological Sciences 2008;35(1):69-74.
Disease modifying drug treatment: sooner or later?
A Cochrane review has assessed clinical trials comparing disease modifying drugs (DMDs) with placebo in preventing conversion from a first MS episode to a confirmed diagnosis of MS, ie prevention of a second attack. The combined results of three trials (a total of 1160 participants, 639 treatment, 521 placebo) found that the proportion of people developing MS was significantly lower in those treated with beta interferon after one and two years of follow-up. The reviewers advocate further studies to identify subgroups of people most likely to benefit from early treatment as well as follow-up for more than two years.
Cochrane reviews explore the evidence for and against the effectiveness of treatments by rigorously analysing and comparing the results of clinical trials. They are highly regarded by the medical profession.
Prescription of disease modifying drugs on the NHS was introduced in 2001 with criteria based on guidelines drawn up by the Association of British Neurologists (ABN). These stated that treatment should follow two relapses in the previous two years. In 2007, the ABN published revised guidelines that recognise the benefit of treatment after a single attack.
Clerico M, et al.
Recombinant interferon beta or glatiramer acetate for delaying conversion of the first demyelinating event to multiple sclerosis.
Cochrane Database Systematic Reviews 2008 Apr 16; (2):CD005278.
Laquinimod for relapsing/remitting MS
Laquinimod is a new oral drug currently under investigation for relapsing/remitting MS (RRMS). In a multicentre, double-blind, placebo-controlled study of 306 people with RRMS, laquinimod was given at two different doses for nine months. The higher dose significantly reduced the number of active lesions seen in scans from month six onwards. The lower dose was not effective. Laquinimod treatment resulted in increased liver enzymes levels and in one case a more serious side effect resulting from a blood clot in the vein leading from the liver. Further phase III studies are underway.
An accompanying editorial comments on the study and considers the difficulty of measuring and comparing the effectiveness of new disease modifying treatments with existing treatments.
Comi G, et al.
Effect of laquinimod on MRI-monitored disease activity in patients with relapsing-remitting multiple sclerosis: a multicentre, randomised, double-blind, placebo-controlled phase IIb study.
Lancet 2008; 371:2085-2092.
Keegan BM, et al.
Laquinimod, a new oral drug for multiple sclerosis.
Lancet 2008; 371:2059-2060.
Falls and MS
354 people, aged 55 to 94 years were asked if they had received medical treatment for a fall, within the last six months, more than six months ago or never. More than 50% of the participants reported injurious falls, 12% within the last six months. Those who had fallen recently were more likely to report fear of falling and osteoporosis. The researchers point out that fear of falling may lead to less physical activity and reduced physical fitness which in turn, might increase the risk of further falls. Management of fear of falling and osteoporosis should be part of fall injury prevention programmes.
Peterson EW, et al.
Injurious falls among middle aged and older adults with multiple sclerosis.
Archives of Physical Medicine and Rehabilitation 2008; 89(6):1031-1037
In April, the MS Trust published Falls: Managing The Ups And Downs of MS. This book includes a section on managing the fear of falling along with tips for reducing the risk factors and what to do if you do have a fall.
Read, order or download a copy of Falls: Managing The Ups And Downs of MS
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