The Patient Perspective: A Qualitative Investigation of the Lived Experience Among Those with Thyroid Eye Disease
Author: Charlotte Ward
Base Hospital / Institution: ZS Associates
ePoster presentation
Abstract ID: 25-597
Purpose
To understand the lived experiences of Thyroid Eye Disease (TED) patients, focusing on their diagnostic journey, and the physical, social, and emotional impacts of TED.
Methods
Findings are from four qualitative data gathering projects conducted between November 2024 and February 2025. These US-based studies involve 52 adult TED patients, as well as doctors, caregivers, and other experts. The studies utilize interviews, panels, and competitive social audits.
Results
TED patients often endure a lengthy, fragmented diagnostic process, marked by uncoordinated care and frequent misdiagnoses. The absence of a dedicated specialty for TED results in patients being shuffled between various specialists, leading to significant delays in definitive diagnoses. This leaves many patients feeling frustrated and unheard as they struggle to obtain necessary testing and treatment. Additionally, healthcare providers often focus primarily on treatment, neglecting to educate patients on the disease and associated risks. Many patients report not receiving complete information and rarely understanding the rationale behind medical recommendations. The psychosocial and emotional impacts of TED, like disfigurement, loss of independence, and fear of relapse or blindness are frequently unacknowledged by providers. These issues can lead to withdrawal and isolation, as visible symptoms like eye-bulging are constant reminders of their condition. Patients express feeling as though “all eyes were on them,” and feeling misunderstood by others. As a result, some patients seek treatment or surgery to regain confidence, and many seek support through the TED community, helping them reclaim their lives before diagnosis and disfigurement.
Conclusion
The study underscores the need for an integrated approach to TED care that addresses physical and psychosocial impacts. Enhancing provider education and fostering empathetic understanding could significantly improve patient outcomes and satisfaction, highlighting the importance of comprehensive care in managing TED.
Additional Authors
| First name | Last name | Base Hospital / Institution |
|---|---|---|
| Christine | Gustafson | TED Community Organization |
| Shelley | Gerson | argenx |
| Lauren | Roseman | ZS Associates |
| Syed | Raza | argenx |
