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Information needs of people newly diagnosed with MS Completed project summary

Ros Levenson, Mercy Jeyasingham and Sarah Smith.

In 2012, 49 people with multiple sclerosis and ten family members were interviewed about what was important when providing information around the time of diagnosis with MS.

Key findings were:

  • Neurologists and MS specialist nurses were the key providers of information around the time of diagnosis
  • The need for information changes over time, not always in a predictable way
  • Information should be offered in stages or layers, so that a person can choose how much information they receive on a particular topic at any particular time
  • Positive, practical, up to date information is important
  • Information tailored to the needs of an individual is useful
  • Information should be delivered in a variety of formats
  • The evidence base, or lack of evidence, should be made clear
  • Information can be empowering but too much information, or information at the wrong time, can be detrimental
  • Some people need support to use certain information, for example, when choosing a disease modifying treatment
  • Charities play an important role, including signposting to other organisations
  • Information was lacking in some areas especially on benefits and local services
Detailed summary of the study

Acknowledgements

The MS Trust would also like to thank the Tony Bloom Charitable Trust and the generous donors and fundraisers who made this research possible.