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Recognizing the ‘Diagnosis’ focus of this year’s World MS Day

9 April 2024

World MS day is an opportunity to raise awareness of multiple sclerosis (MS), as well as the needs of people living with MS and the ways in which healthcare teams can best empower them throughout their disease journeys. This year, World MS day is focused on the topic of diagnosis, with the aims of promoting accurate and early diagnosis and building informed MS communities and care systems that support people around this sensitive time.

Diagnosis – particularly the needs of people around the time of their diagnosis and the impact of how it is communicated to them – has been a key theme of focus for the MS in the 21st Century (MS21) initiative since 2022 and is something the MS21 initiative members feel passionately about.

‘Over the years, I’ve spoken to other people with MS: it is clear to me that the way in which the diagnosis was communicated to them, along with what information is given, is critical to how they are going to self-manage their disease.’ – David Yeandle, person living with MS

MS21 advisors have highlighted several key challenges that both people receiving an MS diagnosis and (Healthcare providers) HCPs face at this sensitive time: for example, the lack of time HCPs have for each consultation; the difficulty of determining how much information is ‘enough’ to give at diagnosis; tailoring the information they give each individual; or, the response that patients feel at diagnosis and how this affects how much information they are able to retain after their initial consultation.

‘My wish is always to have enough time to talk to my patients until they have answers to all of their questions.’ – Elisabeth Gulowsen Celius

MS21 advisors have highlighted the potential need for guidance on delivering diagnosis news. Overall, ‘good’ MS care around the time of diagnosis might involve:

  • Empathetic HCP communication
  • Giving enough information to newly diagnosed people so that they can be informed moving forward
  • Explaining to newly diagnosed people that although MS is currently incurable, it is manageable, and they do have some control over their disease
  • Allowing enough time to pass between the initial diagnosis consultation and the next meeting/time for treatment decision-making so that people can process the news and look at the information given
  • Scheduling a follow-up consultation to check in after the initial diagnosis as an opportunity for people to ask questions about their diagnosis or MS in general
  • Providing a contact person whom newly diagnosed people can go to for questions

MS21 advisors have shared several practical recommendations that can help facilitate communication during the diagnosis consultation:

  • Patients could ask their HCPs about recording the initial diagnosis conversation so that they can take time to process the information after the consultation
  • HCPs could sensitively suggest that patients arrive at the diagnosis consultation accompanied by someone for support
  • HCPs can adapt communication for each patient, by prioritizing listening to and understanding their patients who have just received MS diagnoses
  • MS care teams could signpost patients to MS patient organizations, as these are reliable sources of additional information and support
  • MS care teams could provide practical advice to people newly diagnosed with MS about things such as notifying driving license agencies, registering for utilities discount programs, health insurance, etc.
  • HCPs could challenge common stereotypes of MS and remind their patients that the prognosis for MS has improved greatly over the years owing to new treatments

MS21 has a history of developing resources for people living with MS to facilitate their communication with their HCPs and wider care teams and to support their disease management. Furthermore, MS21 has on several occasions collaborated with the podcast channel RealTalk MS, which is dedicated to sharing news to the MS community about the latest updates in clinical MS research and healthcare legislation, as well as important topics in MS advocacy. The RealTalk MS/MS21 collaborative episode about the needs of people at diagnosis can be found by clicking here.