• New findings highlight what people need most, and how MS teams can translate insight into action. 

 MS in the 21st Century (MS21) is excited to share our new paper, “Understanding the Needs of Patients at Diagnosis and Throughout Their MS Journey,” which has been published in the journal Neurology and Therapy. This paper talks about what people with MS might need when they are first diagnosed and how they can feel confident discussing their symptoms with their healthcare team. It also gives ideas on how to build trust between patients and healthcare teams. 

Four themes key to the MS care experience 

After gathering lots of information and meeting with our advisors over many years, we found four key areas for helping to improve the care experience for people with MS: 

1. Better communication between people with MS and healthcare professionals
2. Information that is valuable to people with MS 
3. Trustworthy resources for information 
4. Emotional support  

To understand these areas better, we asked people with MS to fill out surveys and participate in interviews. This information was then used by an expert committee to come up with specific recommendations to help people with MS. 

Here are some of the recommendations: 

• Give clear next steps to a person with MS after they are diagnosed   
• Offer people several appointments in the first month after diagnosis to answer questions and build trust 
• Healthcare professionals can share patient stories, especially detailed ones about daily life, so newly diagnosed people can relate
• Inform newly diagnosed people about available support services, even if they don’t need them right away 
• Provide mental health counseling around the time of diagnosis 

The article also discusses important things like how overwhelming a diagnosis can be, the challenges of talking about “hidden symptoms,” and why trust is crucial for creating a treatment plan that works for a person with MS. 

MS21 has also updated our helpful pre-appointment planner, myMS priorities [found here], with two new versions: 

• One for people who are newly diagnosed 
• One for people who have been living with MS for a while 

This article aims to highlight the specific needs of people newly diagnosed with MS, and offers practical solutions to support them from the beginning and throughout their journey with MS. It also aims to help people with MS have meaningful conversations with their healthcare team about what matters most to them. 

Read the publication here.