Sharing clinical trial results with people with MS

People with MS want to be as well informed as possible about the risks and benefits of disease-modifying therapies (DMTs). Evidence on the risks and benefits of each therapy comes mostly from studies designed to evaluate the effects of an active treatment compared with a dummy treatment (known as a placebo). Some of these studies have complex results. With over 10 DMTs for MS now available in the UK alone, there is a lot of data to process. Not surprisingly, people with MS can feel challenged by this.

Professor Langdon and colleagues at Royal Holloway, University of London, have completed a series of studies to determine what makes information about DMTs most accessible to people with MS.

  • Including baseline information always helps. For example, “150 patients taking treatment A experienced risk Y and 50 patients taking placebo experienced risk Y”.
  • Absolute terms are easier to process than ‘relative’ terms. For example, “100 more patients taking treatment A will experience risk Y…” is clearer than “2 times as many patients taking treatment A will experience risk Y…”.

By contrast, information formats that are not very accessible include numbers needed to harm. For example, “10 patients would have to take treatment A for one patient to experience risk Y” is not a straightforward concept.

These results are being communicated to healthcare professionals so that they can support people with MS choose an appropriate therapy, as part of shared decision-making.

Reference

  1. Reen GK, Silber E, Langdon DW. The best methods of communicating clinical trial data to improve understanding of treatments for patients with multiple sclerosis. Value Health. 2018;XX:XXX–XXX; doi:10.1016/j.jval.2017.12.015.


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