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MS research update - Information about MS: where do people go? - 08 May 2013

Summary

This study looked at where people living with MS in the USA preferred to obtain health information, including information about MS. It found that mass media (books, newspapers, brochures, library, magazines, internet) was the first source used by 83% of people for general health information and 68% for information about MS. The most trusted source of information was health professionals with almost everyone (98%) reporting that they trusted them a lot or to some extent. Nearly 40% of participants had concerns about the quality of information that they found overall.

Background

Having good information is really important when making any decision but, perhaps, particularly important when deciding about health.

This study looked at where people with MS obtained their health information, which sources were most trusted and how these factors might vary in different groups of people.

How this study was carried out

8,586 people living with MS in the USA were asked about their sources of health information. All of them were participants in the NARCOMS (North American Research Committee on Multiple Sclerosis) global registry of people with MS.

The questionnaire asked about seeking information:

  • on any health topic during the person's most recent search
  • about MS in particular

The questionnaire asked about using books, family, friends and colleagues, the internet, newspapers, MS organisations and health care professionals as sources of information.

What was found

Mass media (books, newspapers, brochures, library, magazines, internet) was the first source used by 83% of people for general health information and 68% for information about MS. In particular, the internet was used as a first source on general health issues by almost three quarters (73%) and on MS by more than half (59%). People who were younger, less affected by their MS and/or had a higher income were more likely to use mass media first rather than interpersonal sources of information such as family, friends or patient organisations.

Information was sought on a range of topics around MS including treatments (79%), general information (63%), where to get medical care (18%) and support for coping with MS (55%).

The most trusted source of information was health professionals with almost everyone (98%) reporting that they trusted them a lot or to some extent. 80% of participants reported a lot of trust in physicians while only 23% reported a lot of trust in the internet. Younger people were more likely to trust the internet and patient support groups than older people. Nearly 40% of participants had concerns about the quality of information that they found.

What does it mean?

The authors concluded that the range of information sought about MS highlights the varied information needs of people with MS.

Many of the conclusions of this study in the USA are likely to apply to people with MS elsewhere in the world including the UK. However some of the conclusions of the report related to the American health care system. For example, lower family income and lack of health insurance was associated with a lower probability of receiving care from a neurologist and for symptoms such as bladder, cognitive or mental health issues.

Marrie RA, Salter AR, Tyry T, et al.
Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought..
J Med Internet Res. 2013 Mar 17;15(4):e67.
abstract
Read the full text of this paper

More about getting good health information

The MS Trust believes that people should be able to make decisions about the management of their MS based on reliable, evidence-based information. Our information has been awarded the Information Standard. We had to show that the way we produce information is:

  • accurate
  • impartial
  • balanced
  • evidence-based
  • accessible
  • well-written.

All our factsheets and booklets carry the Information Standard as does much of our web site so you can be sure that they have been produced to the standard required. The MS Trust is audited every year.

If you would like more information about MS, you can search our web site. The A to Z of MS can be a good place to start or the About MS section.

We also have a range of publications which you can read online, download as pdf files or order in printed format.

If you have any questions and would like to speak to someone, please contact our Information Service on 0800 032 3839 or 01462 476700 or email infoteam@mstrust.org.uk

Research by topic areas...

Disease modifying treatments

Tanasescu R, Evangelou N, Constantinescu CS.
Role of oral teriflunomide in the management of multiple sclerosis.
Neuropsychiatr Dis Treat. 2013;9:539-53.
abstract
Read the full text of this paper

Kousin-Ezewu O, Coles A.
Alemtuzumab in multiple sclerosis: latest evidence and clinical prospects.
Ther Adv Chronic Dis. 2013 May;4(3):97-103.
abstract
Read the full text of this paper

Cohen JA, Barkhof F, Comi G, et al.
Fingolimod versus intramuscular interferon in patient subgroups from TRANSFORMS.
J Neurol. 2013 Apr 30. [Epub ahead of print]
abstract

Other treatments

Kohlmann T, Wang C, Lipinski J, et al.
The impact of a patient support program for multiple sclerosis on patient satisfaction and subjective health status.
J Neurosci Nurs. 2013 Jun;45(3):E3-E14.
abstract

Santos-Silva A, da Silva CM, Cruz F.
Botulinum toxin treatment for bladder dysfunction.
Int J Urol. 2013 May 2. doi: 10.1111/iju.12188. [Epub ahead of print]
abstract

Rehabilitation

Oral A, Yaliman A.
Revisiting the management of fatigue in multiple sclerosis in the context of rehabilitation: a narrative review of current evidence.
Int J Rehabil Res. 2013 Jun;36(2):97-104.
abstract

Assessment tools

Forsberg A, Andreasson M, Nilsagård YE.
Validity of the Dynamic Gait Index in people with multiple sclerosis.
Phys Ther. 2013 May 2. [Epub ahead of print]
abstract

Strober L, Chiaravalloti N, Moore N, et al.
Unemployment in multiple sclerosis (MS): utility of the MS Functional Composite and cognitive testing.
Mult Scler. 2013 May 1. [Epub ahead of print]
abstract

Causes of MS

Salzer J, Sundström P.
Timing of cigarette smoking as a risk factor for multiple sclerosis.
Ther Adv Neurol Disord. 2013 May;6(3):205.
abstract
Read the full text of this paper

Psychological aspects

Tabrizi YM, Mazhari S, Nazari MA, et al.
Compromised motor imagery ability in individuals with multiple sclerosis and mild physical disability: An ERP study.
Clin Neurol Neurosurg. 2013 Apr 29. doi:pii:S0303-8467(13)00122-4. 10.1016/j.clineuro.2013.04.002. [Epub ahead of print]
abstract

Langdon DW, Benedict RH, Wicklein EM, et al.
Reports of patients and relatives from the CogniCIS Study about Cognition in Clinically Isolated Syndrome: what are our patients telling us?
Eur Neurol. 2013 Apr 26;69(6):346-351. [Epub ahead of print]
abstract

Physical activity

Mulligan H, Treharne GJ, Hale LA, et al.
Combining self-help and professional help to minimize barriers to physical activity in persons with multiple sclerosis: a trial of the "blue prescription" approach in New Zealand.
J Neurol Phys Ther. 2013 May 2. [Epub ahead of print]
abstract

Economics

Thompson JP, Abdolahi A, Noyes K.
Modelling the cost effectiveness of disease-modifying treatments for multiple sclerosis : issues to consider.
Pharmacoeconomics. 2013 May 3. [Epub ahead of print]
abstract

Hawton A, Shearer J, Goodwin E, et al.
Squinting through layers of fog: assessing the cost effectiveness of treatments for multiple sclerosis.
Appl Health Econ Health Policy. 2013 May 1. [Epub ahead of print]
abstract

Pregnancy and childbirth

Houtchens M.
Multiple sclerosis and pregnancy.
Clin Obstet Gynecol. 2013 Jun;56(2):342-9.
abstract

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