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

MS in the 21st Century (MS21) is thrilled to announce the release of our latest publication, “Understanding the Needs of Patients at Diagnosis and Throughout Their MS Journey”, now in Neurology and Therapy. This paper explores patients’ needs at the time of diagnosis, how patients can be empowered to have meaningful conversations with healthcare professionals about symptoms and their impacts, and ways to build trust in patient-HCP relationships to support these conversations. 

Four themes shaping the MS care experience 

Through a culmination of work spanning several years, the MS21 initiative uncovered four key themes that need to be addressed to improve the MS patient care experience: 

1. Communication needs 
2. Access to meaningful information 
3. Reliable resources 
4. Emotional support 

To better understand the patient perspective on these themes, MS21 carried out quantitative surveys and qualitative interviews, and used this data to guide the development of specific recommendations.  

Key recommendations 

Recommendations include:  

• providing patients with clear next steps following diagnosis; providing patients with multiple consultations in the first month after diagnosis to help address key questions and build trust between HCPs and newly diagnosed patients 
• signposting to patient stories, especially long-form stories about daily life, as they make the content relatable 
• informing newly diagnosed patients about available support services, even if they may not use them immediately 
• offering mental health counselling around the time diagnosis 

The article concludes with insights relevant to implementing these recommendations, such as patient overwhelm, barriers around communicating “hidden symptoms” and the importance of trust when developing a shared treatment plan.  

Turning insight into action 

To support more effective conversations, MS21 has updated the popular pre-appointment planner – myMS priorities [found here] – with specifically designed versions for: 

• Newly-diagnosed people 
• People further along in their MS journey 

… and these are ready to share with your patients now, ahead of their next consultation.  

This publication highlights the specific needs of newly-diagnosed patients and provide practical solutions to support patients at the beginning and throughout the MS journey, helping empower patients to have effective and meaningful conversations with their healthcare team about what most matters to them.  

Read the publication here.