Patient Journey & Unmet Needs: Thyroid Eye Disease (TED)
A two-stage patient research study combining an online survey and panel discussions to understand the experiences of patients with TED
Challenges
Limited Patient Networks
The absence of established TED patient organizations in Germany made patient identification and engagement challenging.
Diverse Patient Representation
Reaching a broad patient population was essential to capture diverse disease and treatment experiences.
Understanding Patient Impact
Limited insight into TED’s impact on quality of life, psychological well-being, treatment experiences, and daily life.
Objectives & Endpoints
Patient Disease Journey
Understand patients’ experiences with diagnosis, treatment, specialist care, and disease management.
Patient Impact & Unmet Needs
Explore the physical and psychological burden of TED, challenges in daily life, and gaps in care and support.
Patient Voice & Support
Identify opportunities to improve patient education, access to specialist care, treatment options, and peer exchange.
Our Approach
Digital Patient Recruitment
Used online tactics and social media to identify and recruit TED patients in Germany.
In-Depth Patient Interviews
Conducted 10 patient interviews to explore individual disease journeys, treatment experiences, challenges, and unmet needs.
Patient Panel Discussions
Invited 5 patients to an online panel for structured group discussions, enabling peer exchange and deeper exploration of shared experiences.
Key Findings
Gaps in Disease Awareness: Patients highlighted a lack of TED knowledge among many physicians, contributing to difficulties in diagnosis and care.
Patients Want to Be Heard: Patients felt their experiences were often not sufficiently heard or recognized by physicians, with some needing significant persistence to have their concerns addressed.
Strong Need for Peer Exchange: Patients expressed a clear need to connect with like-minded individuals, exchange experiences, and feel understood by others facing similar challenges.
Business Impact & Outcomes
Identified Care Gaps: Highlighted opportunities across the care pathway, from diagnosis and patient education to specialist access and treatment options.
Patient Engagement Opportunities: Demonstrated the value of peer-to-peer exchange and patient support platforms in addressing patients’ need for connection and information.
Actionable Patient Insights: Provided evidence to inform patient education, support initiatives, and strategies to improve the overall TED care experience.
*Campaign Days Refers to the number of days between the first and last day of survey completions