August 6, 2003
This month we take a look at a report addressing information needs and a further study of cooling therapy.
The need for information - a priority for people with MS.
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 of 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 report was published in International Journal of Therapy and Rehabilitation, May 2003, vol 10, no 5, pages 211-216.
The research was funded by the MS Society of Great Britain and Northern Ireland.
Is cooling beneficial for MS?
In MS, damage to nerve fibres causes the messages which pass along them
to slow and become blocked. This can result in a variety of symptoms associated
with MS. Cooling nerve fibres has been shown in laboratory based models
and in some small studies of people with MS to improve the speed of messages
passed along nerves, and consequently improve symptoms.
However the effect of cooling nerves has not been studied in a controlled way in people with MS. This study aims to evaluate the effect of a single 1-hour cooling session (acute cooling), and daily cooling over a four-week period (chronic cooling).
A cap and vest were used to provide high and low doses of cooling. The effects on leg and arm function, vision and cognition were monitored before and after each acute treatment. During chronic treatment participants were asked to self-rate their fatigue, strength and cognition. This was compared to symptoms reported during a four-week period without wearing the cooling equipment.
High dose acute cooling was shown to produce small improvements in timed walking and vision, with low dose cooling producing less of an effect. Chronic cooling was rated by three quarters of participants as improving energy levels, with beneficial effects lasting from midmorning into the evening. However, improvements in fatigue were also reported by 40% of people with MS over the four-week period without cooling.
This study has shown small improvements with acute cooling, and also underlines the impression of the participants that long term cooling was beneficial. This finding is consistent with previous, smaller, studies reporting a benefit of cooling on a variety of symptoms of MS. The lack of side effects and small improvements in limb function and vision are highlighted and the authors suggest long-term cooling could be considered as an additional therapy to existing treatments.
This report was published in Neurology, June 2003, vol 60, pages 1955 -1960.
Marianne Miles PhD, Research Manager
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