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MS research update - Making the right decisions: how evidence-based information can help - 6 May 2014

Summary

People with early MS face a number of uncertainties including diagnosis and the effectiveness of drug therapy. Several previous studies have shown that there is a lack of communication and information for people with MS especially just after diagnosis. These uncertainties and lack of information can mean making an informed decision is difficult.

This study aimed to assess whether an evidence-based information programme for people with early MS was able to increase autonomy and informed choice in decision making.

The researchers found more intervention group participants (60%) showed informed choice at six months compared to the control group participants (20%). There was a trend for participants in the intervention group to be more independent and autonomous in their decision to start treatment, immediately following the education programme. Also these participants were more likely to stay on treatment and take it correctly.

This study shows that an evidence-based information programme for people recently diagnosed with MS, increases informed choice without any negative side effects.

Background

People with early MS face a number of uncertainties including diagnosis and the effectiveness of drug therapy. There are a number of decisions people recently diagnosed with MS need to make and these uncertainties can mean making an informed decision is difficult. Previous studies have shown that people with MS have increased satisfaction and knowledge of how to manage their disease when they have had in-depth counselling from their physician. Several other studies have shown that there is a lack of communication and information for people with MS and there is especially a need for better information and support during diagnosis and the early stages of MS.

This study aimed to assess whether an evidence-based information programme for people with early MS was able to increase autonomy and informed choice in decision making.

How this study was carried out

192 people with relapsing-remitting MS or clinically isolated syndrome were recruited to the study via six university-based MS out-patient clinics in Germany. All participants had received their diagnosis within the last two years.

The participants were randomised into two groups. The intervention group received a 57 page information booklet, which summarised relevant methodological information as well as recent evidence on diagnosis, prognosis and treatments in MS. Two weeks later they took part in a four hour education programme. This presented the best available evidence regarding diagnostic testing, prognosis and early disease modifying therapy (DMT) in MS. The education course was led by two non-medical people and consisted of presentations, and time to allow the participants to reflect on their own experiences and be involved in group discussions.

The control group received a short five page information leaflet with information on MS diagnosis, prognosis and therapy. Two weeks later they them took part in a four hour MS-specific stress management programme, which was led by a specially trained psychologist. This focused on management of stress and anxiety and provide stress coping strategies.

Both groups were followed up for one year. The main assessment measure was the proportion of participants displaying 'informed choice' after six months. Informed choice was defined as having good risk knowledge (a good understanding of the risks of treatments) and agreement between attitude towards drug treatment and actual uptake of drug treatment.

What was found

More intervention group participants (60%) showed informed choice at six months compared to the control group participants (20%). This difference was mostly due to the difference in risk knowledge between the two groups, as there was no significant difference in the attitude to disease modifying drug therapy or the uptake of treatment.

There was a trend for participants in the intervention group to be more independent and autonomous in their decision to start treatment, immediately following the education programme. Also these participants were more likely to stay on treatment and take it correctly.

What does it mean?

This study shows that an evidence-based information programme for people recently diagnosed with MS, increases informed choice without any negative side effects. There are often concerns that giving people too much information may overwhelm them or that fewer will opt for effective treatments. This study showed that this was not the case and information and knowledge helped people make the right decision for them.

Köpke S, Kern S, Ziemssen T, et al.
Evidence-based patient information programme in early multiple sclerosis: a randomised controlled trial.
J Neurol Neurosurg Psychiatry. 2014 Apr;85(4):411-8.
abstract
Read the full text of this paper

More about getting the right information

Everyone's MS is different. The symptoms experienced depend on the position and extent of the scarring or lesions within the central nervous system and on how much damage has occurred, so no two people with MS will have exactly the same set of symptoms. Therefore decisions about life, treatment and how best to self-manage symptoms are very personal decisions to make. It is therefore important to make the right choices, but this can be very difficult without all the information or evidence, as there may be something that is better, that you could be unaware of.

The MS Trust believes that people with MS should have the information to help them make the right choices for them. Our information is free, practical and based on good evidence. We have been awarded the Information Standard, a scheme originally set up by the Department of Health, which is a quality mark that enables people to quickly identify reliable sources of quality, evidence-based information.

We have a wide range of resources for people with MS, including information on being newly diagnosed, treatments, symptoms and living with MS. Please see the A-Z of MS or browse our publications.

Research by topic areas...

Assessment tools

Koch MW, Murray TJ, Fisk J, et al.
Hand dexterity and direct disease related cost in multiple sclerosis.
J Neurol Sci. 2014 Apr 2. [Epub ahead of print]
abstract

Basic research

Kuchling J, Ramien C, Bozin I, et al.
Identical lesion morphology in primary progressive and relapsing-remitting MS -an ultrahigh field MRI study.
Mult Scler. 2014 Apr 29. [Epub ahead of print]
abstract

Carers

Labiano-Fontcuberta A, Mitchell AJ, Moreno-García S, et al.
Cognitive impairment in patients with multiple sclerosis predicts worse caregiver's health-related quality of life.
Mult Scler. 2014 Apr 28. [Epub ahead of print]
abstract

Diagnosis

Langer-Gould A, Brara SM, Beaber BE, et al.
The incidence of clinically isolated syndrome in a multi-ethnic cohort.
J Neurol. 2014 Apr 29. [Epub ahead of print]
abstract

Disease modifying treatments

Calabresi PA, Kieseier BC, Arnold DL, et al.
Pegylated interferon beta-1a for relapsing-remitting multiple sclerosis (ADVANCE): a randomised, phase 3, double-blind study.
Lancet Neurol. 2014 Apr 30. [Epub ahead of print]
abstract

Jongen PJ, Lehnick D, Koeman J, et al.
Fatigue and health-related quality of life in relapsing-remitting multiple sclerosis after 2 years glatiramer acetate treatment are predicted by changes at 6 months: an observational multi-center study.
J Neurol. 2014 May 3. [Epub ahead of print]
abstract

Sorensen PS.
New management algorithms in multiple sclerosis.
Curr Opin Neurol. 2014 Apr 22. [Epub ahead of print]
abstract

Heesen C, Bruce J, Feys P, et al.
Adherence in multiple sclerosis (ADAMS): Classification, relevance, and research needs. A meeting report.
Mult Scler. 2014 Apr 22. [Epub ahead of print]
abstract

Genetics

Disanto G, Dobson R, Pakpoor J, et al.
The refinement of genetic predictors of multiple sclerosis.
PLoS One. 2014;9(5):e96578. 
abstract

Hormones and MS

Gava G, Bartolomei I, Costantino A, et al.
Long-term influence of combined oral contraceptive use on the clinical course of relapsing-remitting multiple sclerosis.
Fertil Steril. 2014 Apr 29. [Epub ahead of print]
abstract

Othertreatments

Pavisian B, Macintosh BJ, Szilagyi G, et al.
Effects of cannabis on cognition in patients with MS: A psychometric and MRI study.
Neurology. 2014 Apr 30. [Epub ahead of print]
abstract

Koppel BS, Brust JC, Fife T, et al.
Systematic review: Efficacy and safety of medical marijuana in selected neurologic disorders: Report of the Guideline Development Subcommittee of the American Academy of Neurology.
Neurology. 2014 Apr 29;82(17):1556-63.
abstract

Physical activity

Ché F, Phu H.
Neuromuscular electrical stimulation cycling exercise for persons with advanced multiple sclerosis.
J Rehabil Med. 2014 Apr 22. [Epub ahead of print]
abstract
Read the full text of this paper

Provision of care

[No authors listed]
MS nurses join project to prove the value of specialist role.
Nurs Stand. 2014 Apr 30;28(35):9.
abstract
Read the full text of this paper

Psychological aspects

Jongen PJ, Wesnes K, van Geel B, et al.
Relationship between Working Hours and Power of Attention, Memory, Fatigue, Depression and Self-Efficacy One Year after Diagnosis of Clinically Isolated Syndrome and Relapsing Remitting Multiple Sclerosis.
PLoS One. 2014;9(5):e96444.
abstract
Read the full text of this paper

Rehabilitation

Frevel D, Mäurer M.
Internet-based home training is capable to improve balance in multiple sclerosis: a comparative trial with hippotherapy.
Eur J Phys Rehabil Med. 2014 Apr 23. [Epub ahead of print]
abstract

Self-management

Quinn D.
The right information can transform lives.
Nurs Stand. 2014 Apr 30;28(35):31.
abstract

Flachenecker P, Buckow K, Pugliatti M, et al.
Multiple sclerosis registries in Europe - results of a systematic survey.
Mult Scler. 2014 Apr 28. [Epub ahead of print]
abstract

Köpke S, Solari A, Khan F, et al.
Information provision for people with multiple sclerosis.
Cochrane Database Syst Rev. 2014 Apr 21;4:CD008757. [Epub ahead of print]
abstract
Read the full text of this paper

Symptoms and symptom management

Andersson KE.
The many faces of impaired bladder emptying.
Curr Opin Urol. 2014 Apr 21. [Epub ahead of print]
abstract

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