Highlights
- •Study reports an internet survey for a descriptor of someone with MS.
- •MSer is a preferred new term to describe someone with MS in Lay and other reports.
- •Person/People with MS is also a good and acceptable descriptor.
- •Patient as a descriptor receives little support.
- •Client and suffer should be avoided in both lay and formal scientific reports.
Abstract
Lay-members of the public are often involved in grant and ethics review panels. Furthermore
grant applications/reports all require some form of lay summary. In response to critical
remarks from people with multiple sclerosis (MS) about using the term ‘sufferer’ as
a descriptor, a series of surveys using the internet/social media were undertaken.
People who had MS did not like being called the politically-correct ‘client’ (1%)
but also preferred not to be called a ‘patient’ (5%) or a ‘sufferer’ (6%) and felt
that these were largely ‘poor’ terms to describe someone with MS. Likewise ‘person
living with MS’ did not find favour (11%). In contrast ‘person/people with MS’ received
a lot of support (34%) but the majority of responders of the surveys (n=396) supported the use of the term ‘MSer’ (43%) to describe someone with MS. This
was considered to be ‘good’ descriptor along with ‘person with MS’. We suggest therefore
that ‘MSer’ can be used as a new descriptor when writing about someone with MS, especially
in lay summaries. Furthermore the use of ‘patient’ and notably ‘sufferer’ and ‘client’
should be avoided within both the lay and scientific literature.
Keywords
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References
- State vocational rehabilitation services and employment in multiple sclerosis.Multiple Sclerosis Journal. 2013; ([Epub ahead of print]. 10.1177/1352458513482372)
Giovannoni G. http://multiple-sclerosis-research.blogspot.co.uk/2012/03/new-survey-how-to-refer-to-someone-who.html; 2012.
Giovannoni G. 〈http://multiple-sclerosis-research.blogspot.co.uk/2013/01/oh-no-not-another-survey.html〉; 2013.
- A new prevalence study of multiple sclerosis in Orkney, Shetland and Aberdeen city.Journal of Neurology, Neurosurgery, and Psychiatry. 2012; 83: 719-724
Article info
Publication history
Published online: July 19, 2013
Accepted:
June 19,
2013
Received:
May 3,
2013
Identification
Copyright
© 2013 Elsevier B.V. Published by Elsevier Inc. All rights reserved.
