Treatment & Wellbeing: Multiple Sclerosis Patient Survey
A nationwide survey exploring mental health and quality of life (QoL) among Multiple Sclerosis (MS) patients in Germany
Challenges
Ensuring meaningful comparisons: Differences in disease stage, treatment history, and patient characteristics made it challenging to compare patients receiving the sponsor’s therapy, other DMTs, or no treatment.
Understanding treatment decisions: Multiple factors—including patient beliefs, risk perceptions, treatment experiences, and access to information—could influence DMT initiation, refusal, or delay.
Capturing the patient perspective: Understanding mental health, coping, and QoL alongside patients’ perceptions of NfL and its role in disease monitoring and treatment decisions.
Objectives & Endpoints
Identify key factors influencing refusal or delay of disease-modifying therapies (DMTs).
Compare the impact of treatment status on Mental health, Coping mechanisms, and Quality of life (QoL).
Explore the role of neurofilament light chain (NfL) in:
- Patient awareness of disease progression
- Treatment decision-making
- Overall care experience
Our Approach
Survey Design
Used validated instruments, including FAMS, to assess quality of life, disease burden, stigma, and the patient journey.
EC Approval
Prepared and submitted study documentation for Ethics Committee (EC) approval.
Online Media Outreach Campaign
Conducted an online survey targeting patients diagnosed with multiple sclerosis (MS) in Germany.
Key Findings
Under-treatment and low awareness: App. 25% of survey participants were undertreated as per guideline. The treatment gap is an opportunity for patients and industry.
Segmentation: The profiles of patients treated with Sponsor’s therapy was different from other treatment groups in many dimensions.
Limited specialist availability: 40% of the survey participants were treated by MS specialists, 25% were not in constant control at all.
Business Impact & Outcomes
Targeted Messaging: Informed tailored patient messaging with the right balance of facts and emotional relevance for patients eligible for or receiving the sponsor’s therapy.
Patient-Centric Insights: Generated actionable insights into patient experiences, needs, and quality of life.
Patient Engagement: Provided insights to support more patient-centred approaches to communication and engagement.
*Campaign Days Refers to the number of days between the first and last day of survey completions