Research Findings

New international research published into treatment expectations of people with MS

New international research finds that people living with MS prioritise slowing disease progression when considering treatment choices. People with MS want therapies that reduce the number of relapses they suffer and to achieve better control of symptoms like fatigue and pain.

The TaP-MS survey, published on 8th December, gathered over 1,000 responses from people with MS in countries ranging from the US, Canada and Australia to Sweden, Germany, France and the UK. It found that as well as seeking to stop disease progression people with MS want more vitality and energy. A new University College London School of Pharmacy report (Greater Expectations: the Future Hopes of People with Multiple Sclerosis, also published last week) highlights the value of early diagnosis and universal access to medicines that people with MS and their doctors judge are most likely to benefit them. It stresses the need for personalised combinations of medical, pharmaceutical, nursing, psychological, social and economic support for people with MS and calls for regular auditing of care delivery standards.

Greater Expectations argues that current economic evaluation methods can under-estimate the true value of better MS treatments. Fears about the affordability of high quality health and social care can also be exaggerated. The UCL School of Pharmacy report in addition points to the potential for MS prevention programmes aimed at reducing vitamin D deficiency related risks and cutting smoking and obesity rates amongst teenagers. However, providing disease modifying treatments and investing in ongoing biomedical research are central to further reducing MS related harm. Greater Expectations’ recommendations include:

  • Governments throughout Europe should publicly commit to providing everyone with MS with the treatments that they, their neurologists and other professional advisers judge will offer them maximum benefit;
  • There ought to be open access to reliable, up-to-date, figures on all forms of MS DMT use on a country by country and locality basis;
  • Care funders should provide adequate facilities for the early identification of MS and monitoring treatment outcomes. This includes assuring good access to neurologists and to MRI scanning (Ireland has the lowest number of neurologists per heard in Europe and long waiting times to access MRI) as well as maintaining high quality disease registries;
  • People with MS and organisations representing them have a vital part to play in raising MS care standards, preventing access inequalities and contributing to pharmaceutical literacy

Download TaP-MS (Treatment Expectations and Priorities of People with MS) survey 

Download Greater Expectations: the Future Hopes of People with Multiple Sclerosis

Further reading

MS Ireland's Time to Act report on the importance of early diagnosis and treatment in MS 

MS Treatment Decisions - MS Ireland’s guide to making informed decisions about MS treatment options