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MSer - A new, neutral descriptor for someone with multiple sclerosis.

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  • 1Neuroimmunology 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.

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People with multiple sclerosis (MS) prefer "MSer" or "person with MS" over terms like "patient" or "sufferer." This study recommends using "MSer" in lay summaries for better communication.

Keywords:
Grant reportsLay reportsMultiple sclerosisSocial mediaSurveyTerminology

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Area of Science:

  • Medical Communication
  • Patient Advocacy
  • Social Science Research

Background:

  • Lay members frequently participate in grant and ethics reviews, necessitating clear communication.
  • Previous feedback from individuals with multiple sclerosis (MS) indicated dissatisfaction with certain descriptors.
  • The need for appropriate terminology is crucial for effective patient engagement and scientific reporting.

Purpose of the Study:

  • To identify preferred terminology for describing individuals with multiple sclerosis (MS).
  • To evaluate the suitability of various terms used in scientific and lay literature.
  • To provide recommendations for respectful and accurate language when referring to people with MS.

Main Methods:

  • Online and social media surveys were conducted to gather opinions.
  • A significant number of responders (n=396) participated in the surveys.
  • Quantitative analysis of term preferences was performed.

Main Results:

  • Terms like 'patient,' 'sufferer,' and 'client' were largely disliked by people with MS.
  • 'Person/people with MS' was well-supported, but 'MSer' emerged as the most preferred term (43%).
  • 'MSer' and 'person with MS' were considered 'good' descriptors.

Conclusions:

  • The term 'MSer' is suggested as a preferred descriptor for individuals with MS, particularly in lay summaries.
  • Avoidance of terms such as 'patient,' 'sufferer,' and 'client' is recommended in both lay and scientific contexts.
  • Adopting preferred terminology can enhance communication and respect in medical and research settings.