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MSer – A new, neutral descriptor for someone with multiple sclerosis

Multiple Sclerosis and Related Disorders, 1, 3, pages 31 - 33

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.

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.

Keywords: Social media, Grant reports, Multiple sclerosis, Survey, Lay reports, Terminology.

1. Introduction

Multiple sclerosis (MS) is the commonest cause of non-traumatic disability in young adults and affects more than 1 in 250 people in some parts of the United Kingdom ( Visser et al., 2012 ). The people affected by the disease are typically young, with an average age of onset of 29 to 31 years, and use the internet and related social media for information gathering and dispersion.

In response to ‘public engagement in science’ initiatives, lay members of the public are often involved in review panels for ethics and research grant applications. Importantly, all research grant applications require some form of lay summary of the intended work, when applying for grants. Some of these summaries may not always consider the sensitivities of people with the disease and this is more so when writing academic articles. Here people with MS are often described as; ‘patients’, ‘clients’ – when trying to be politically correct – and ‘suffers’ and ‘markets’. Although the intended audience is aimed at academic and/or clinical peers, an increasingly knowledgeable number of people with MS are reading abstracts and original articles. This occurs as they try to understand their disease, MS-related research and treatment options and side-effects. It is therefore important that researchers appreciate the sensitivities of people with MS (PwMS).

2. Results and discussion

In response to some critical remarks from people who had MS, about using the term ‘MS sufferer’, we performed an anonymous survey using social media ( Giovannoni, 2012 ). Following a short consultation, six options were chosen with the aim of finding the term that best described someone with MS that was neutral, empowering for people living with the disease, non-patronising and did not entrench stereotypes ( Giovannoni, 2012 ). There were 113 responses during a 7 day survey period. During the week of the survey the site ( www.ms-res.org ), was visited approximately 7000 times by people mainly from North America (40%) and the United Kingdom (40%). Few people with MS wanted to be referred to as clients (2%) or patients (5%). Likewise voters did not want to be known as an MS sufferer (MS’er, 8%). Use of ‘Person living with MS(PLWMS)’ was not favoured either (6% responses). This would have clearly create further linguistic/grammatical difficulties such as when using “brain pathology from someone living with MS”. As such PLWMS brain lacks the descriptive power of MSers brain and also has the problem that pathology is post-mortem. It was considered more acceptable (32%) to be referred to as a person or a group of people with MS (PwMS). However, use of the noun ‘MSer’ appeared to be the favourite with 55% of the responders preferring this term.

To address concerns about the validity of the first survey, the anonymous surveys were repeated ( Giovannoni, 2013 ) and this time 171 responses were collected during a 4 day survey period. During the survey the site was visited approximately 2900 times a day by people mainly from North America (30%), the United Kingdom (23%) and Germany (7%) and again supported the use of “MSer” (45% of the voten=146) and then “person with MS” (33% of the vote). PLWMS received 13% of the votes and patient received 7% of the votes. Both ‘suffer’ (2%) and ‘client’ (1%) received little support. In addition a parallel survey on a different social media Blog-site for younger MSers (www.shift.ms) revealed broadly comparable results with 37% favouring MSer, 36% favouring PwMS and few supporting the use of patient (5%) or suffers (6%). No one supporting the use of client (n=95 votes). When all votes were summated across all surveys performed, it was found that 169/396 (43%) voters indicated that ‘MSer’ as a useful descriptor of MS ( Fig. 1 A). Use of ‘PwMS’ was also supported 135/396 (34%) in contrast to ‘client’ which received minimal support 5/396 (1%). Furthermore when respondents were asked to rate the terms as either ‘excellent’ ‘good’, ‘okay’, ‘poor’ and ‘very poor’, relative to each other ( Giovannoni, 2013 ). It was interesting thatclient, andMS sufferwere both considered to be poor (median) descriptors ( Fig. 1 B),patientandPLWMSwere considered Okay (Median), whereas both PwMS and MSers were considered to be good (median) descriptors of MS (n=171 Fig. 1 B).The views about the use of 'MSer' were however more polarized than those for 'PwMS' with 27.8% versus 19.8% respectively, thinking this to be an 'excellent' descriptor compared with 11.7% versus 1.8% respectively, thinking this to be a 'very poor' descriptor.

gr1

Fig. 1 Preference for a descriptor for someone with MS by people with MS. Anonymous surveys were undertaken using Social Media. People in a number of surveys were (A) asked to describe their preferred descriptor for someone with MS and in one instance (B) were asked to rate the descriptor. (A) The results represent the frequency of preferred descriptor of MS from four surveys on 2 different Blog sites ( www.ms-res.org2surveys , www.shift.ms ,) and one facebook (Shift MS) site (n=396). (B) The mean and standard deviation of relative value of the descriptor (n=171). For this a numeric scale was created 1=very poor, 2=poor, 3=okay, 4=good and 5=excellent. Data was analysed using Kruskal-Wallis one way analysis of variance on ranks. *P<=0.05, ***P<0.001 compared to PwMS (black) or MSer (grey).

Whilst there was some concern expressed by MSers that any form of label can be used as a means for division and prejudice, with the need to have descriptors, we therefore suggest that ‘MSer’ can be used when writing about someone with MS, especially when writing lay summaries or using social media. The term PwMS is more formal, but uses more words that can be important in text-restricted reports, and is perhaps more appropriate for the academic literature. This should be used in preference to ‘MS patient’and use of both ‘MS sufferer’ and MS ‘client’ as used in some reports ( Chui et al., 2013 ), should be avoided. Although we have generated the term MSer within the context of MS research, use of the “er” suffix to generate a neutral noun to describe people with other conditions may have wider appeal and may also have utility as a descriptor in more technical publications. Whilst there may be some bias in the type of MSer visiting the Blog sites surveyed, as these people were sufficiently interested to visit a Blog focussed on research, these are the target audience that academics should seek to engage. This is because these people are likely to be the type of people who read scientific articles and join lay grant review panels. Further studies examining larger sample sizes and different media of questionnaires, may provide further insight into describing somebody with MS for academic and lay reports.

3. Conclusions

People with MS are frequent readers of the academic literature and grants invariably have some form of lay summary, it is imperative therefore that people this about their sensitivities when describing them. We describe a new term MSer to describe a person with MS. These terms are preferable descriptors to patient, sufferer or client.

Funding statement

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. Shift MS acknowledges the support of the Wellcome Trust.

Conflicts of interest

None.

References

Footnotes

a Neuroimmunology Unit, Blizard Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, 4 Newark Street, London E1 2AT, United Kingdom

b Shift MS, Leeds, United Kingdom

lowast Corresponding author. Tel.: +4420 7882 2485; fax: +4420 7882 2180.