Impacts of Thyroid Eye Disease (TED), Beyond the Signs and Symptoms: Results from the ElevaTED Patient Survey

Thyroid eye disease (TED) can be visually debilitating and cosmetically disfiguring. Symptoms vary in severity and can lead to drastically impaired quality of life (QoL), ability to work, and mental health. The ElevaTED survey was developed to characterize impacts of TED on QoL, mental health, activities of daily living, sleep, work, and treatment experience.

ElevaTED was conducted in July and August 2024. Participants included adult, US residents, with self-reported physician diagnosis of TED and symptoms that negatively impact daily life.

Among 204 participants who completed the survey, mean age was 50 years (30 to 82) and 74% female. Most (93%) reported experiencing symptoms of TED within the prior month of survey participation, 23% categorized their symptoms as “mild” in severity, 58% “moderate”, and 18% “severe.” Mean number of symptoms experienced was 6 at any time and 3 in the past month, with the most common symptoms reported being “red, swollen, or burning eyes” and “pressure or pain around or behind the eyes.” The majority (72%) of participants indicated their TED symptoms had a “moderate” or “major” impact on their daily life over the prior month. Negative impacts were reported in QoL, sleep, depression, anxiety, and work, across symptom severity groups. Over 80% are worried about their symptoms returning/worsening regardless of treatments and most want to discuss QoL/impacts with their physicians.

The results of ElevaTED highlight the impact that TED has on daily activities and mental health and underscore the need for more in-depth physician–patient dialogue beyond the visible signs and symptoms.