Advertisement

How to refer to people with disease in research outputs: The disconnection between academic practise and that preferred by people with multiple sclerosis

Published:October 13, 2016DOI:https://doi.org/10.1016/j.msard.2016.09.007

      Highlights

      • Someone who has MS prefers to be described as a “person with MS”.
      • People with MS do not want to be referred to as a “sufferer” or “client”.
      • Researchers largely used the term “Patient”, which is not particularly liked by people with MS.
      • A simple change to practises of use of descriptors of MS may help the Patient and Public Involvement (PPI) process.

      Abstract

      Background

      Increasingly, Government and Charity funders require public engagement in research. Invariably these research outputs describe the condition of someone with the disease of interest. We therefore sought to identify the preferred descriptor of someone with a disease, such as multiple sclerosis (MS) and to determine what descriptors are currently used by academics.

      Methods

      Several surveys were undertaken: one from the Research Network of the MS Society (MSSRN), a major MS Charity within the United Kingdom, who are involved in reviewing grant applications, priority setting and research governance (n=146), and surveys from both the United Kingdom MS register (MSR; n=1713) and the North American Research Committee on Multiple Sclerosis (NARCOMS) registry (n=518). People were asked to rate descriptors of someone affected with MS. These were compared to that used by academic experimenters in basic science and clinical science research papers.

      Results

      Although the frequency of responses varied between surveys the overall findings showed many consistencies. This included use of person/people with MS (pwMS) as the preferred descriptor for someone with MS for social media and scientific publications. This was the preferred choice in about 55–60% people from the MRS and in over 70% in the NARCOMS and the MSSRN, respectively. Although MSer was the second preferred–choice for use in social media, there was as a large range of preferences from the ‘most-preferred’ to the ‘most-disliked.’ This reflected an earlier survey by UK-based research blogs using the term MSer (n=173). In contrast, pwMS had few ‘dislikes’ and results were skewed towards the ‘liked’ and ‘most-preferred’ choices. Client and sufferer were generally disliked terms, although there was some regional variation in levels of choice. Patient was generally seen as a neutral term that was neither strongly liked nor disliked. However, patient gained more public support for use within scientific publications (~20–25%) compared to social media (~10–15%). This descriptor was however most commonly used (98–99%) within both pre-clinical (searched in 6-month output of preclinical autoimmune MS models; n=161) and in clinical publications (specialist MS journals; n=220), whereas pwMS was not reported in over 75% of papers published in some specialised MS journals, and did not appear in the pre-clinical animal studies examined.

      Conclusion

      There is a clear disconnection between preferences by individuals living with MS and current academic practise. As pwMS are increasingly reading primary research publications and are involved in patient and public involvement in research and grant review activities, the sensitivities of lay readers should be considered when writing research outputs. This issue may affect other diseases and a change in writing style could be adopted to show that we respect the wishes of the people that we study and wish to help.

      Abbreviations:

      IQ (Intelligence Quotient), MS (Multiple Sclerosis), MSR (MS Register), MSSRN (MS Society Research Network), NARCOMS (North American Research Committee on Multiple Sclerosis), PPI (Patient and public involvement), PwMS (Person/people with MS)

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Multiple Sclerosis and Related Disorders
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Baker D.
        • Pepper G.
        • Yauner F.
        • Giovannoni G.
        MSer - A new, neutral descriptor for someone with multiple sclerosis.
        Mult. Scler. Relat. Disord. 2014; 3: 31-33
        • Baker D.
        • Lidster K.
        • Sottomayor A.
        • Amor S.
        Two years later: journals are not yet enforcing the ARRIVE guidelines on reporting standards for pre-clinical animal studies.
        PLoS Biol. 2014; 12: e1001756
        • Brigo F.
        • Lochner P.
        • Tezzon F.
        • Nardone R.
        Web search behavior for multiple sclerosis: an infodemiological study.
        Mult. Scler. Relat. Disord. 2014; 3: 440-443
        • Compston A.
        • Coles A.
        Multiple sclerosis.
        Lancet. 2008; 372: 1502-1517
        • Ford D.V.
        • Jones K.H.
        • Middleton R.M.
        • Lockhart-Jones H.
        • Maramba I.D.
        • Noble G.J.
        • Osborne L.A.
        • Lyons R.A.
        The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS.
        BMC Med. Inform. Decis. Mak. 2012; 12: 73
        • Jones K.H.
        • Jones P.A.
        • Middleton R.M.
        • Ford D.V.
        • Tuite-Dalton K.
        • Lockhart-Jones H.
        • Peng J.
        • Lyons R.A.
        • John A.
        • Noble J.G.
        Physical disability, anxiety and depression in people with MS: an internet-based survey via the UKMS Register.
        PLoS One. 2014; 9: e104604
        • Kister I.
        • Bacon T.E.
        • Chamot E.
        • Salter A.R.
        • Cutter G.R.
        • Kalina J.T.
        • Herbert J.
        Natural history of multiple sclerosis symptoms.
        Int J. MS Care. 2013; 15: 146-158
      1. Koberlt, G., Kasteng, F., 2009. Access to innovative treatments in multiple sclerosis in Europe, European Federations of Pharmaceutical Industry Associations, pg3:1–3, 20.