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.
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.
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:
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 email@example.com
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Kohlmann T, Wang C, Lipinski J, et al.
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Thompson JP, Abdolahi A, Noyes K.
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