Work

MON-421 The impacts of thyroid eye disease (TED) extend beyond signs/symptoms, and patients want to discuss more with their physicians: Results from the ElevaTED survey

Year: 2025

Type: article

Abstract: Disclosure: K. Cockerham: Consultant/advisor and researcher for Roche, Consultant/advisor and researcher Tourmaline Bio, Consultant/advisor and researcher for Immunovant, Consultant/advisor and researcher for Lassen Therapeutics, Research support (IIT), medical advisory board (consultant), and honoraria for speaking from Horizon Therapeutics, Phase 1 Clinical Trial PI and medical advisory board (consultant) for Viridian Therapeutics, Inc. C. Gustafson: Christine Gustafson serves as the Executive Director + CEO of the TED Community Organization. TED Community Organization has received financial sponsorships from Viridian Therapeutics, Amgen, Tourmaline Bio, Immunovant, Sling, ACELYRIN, agenx, and Lassen Therapeutics. J. Ulloa: Contracted by Viridian Therapeutics. S. Danese: Contracted by Viridian Therapeutics. J. Helfer: Employee of Viridian Therapeutics. S. Pollard: Employee of Viridian Therapeutics. J.G. Abrams: Research investigator for Viridian Therapeutics, Inc; advisory board member for Viridian Therapeutics, Inc and Horizon Therapeutics; Consultant for Viridian Therapeutics, Inc and Horizon Therapeutics, Speaker for Horizon Therapeutics. Introduction: TED is a chronic, debilitating autoimmune disease. Although the signs and symptoms are well known, its effects on quality of life (QoL), mental health, and daily living require more attention. Methods: ElevaTED, a 30-minute online survey, was designed to improve understanding of key issues affecting adults diagnosed with TED. It was distributed to members of multiple patient advocacy organizations and a national panel of patients. Questions focused on QoL, activities of daily living, pain, sleep, depression, anxiety, work productivity, and treatment experience and goals. Results:204 respondents qualified and completed the survey. Mean age was 50 years; 74% were female. Broad ranges of race/ethnicity (53% White) and geographical location (42% suburban, 43 states in U.S.) were represented. The mean (SD) times since first symptoms and diagnosis were 2.7 (4.4) and 2.2 (3.7) years, with 93% reporting symptoms of any severity and 72% reporting moderate-to-severe symptoms in the last month. The average number of symptoms experienced was 6 at any time and 3 in the past month. For the 146 patients with moderate-to-severe symptoms in the past month, the most frequent were eye pressure/pain (38%), red/swollen/burning eyes (35%), and dry/gritty eyes (32%); eye pressure/pain was most frequently reported as single most bothersome. Negative impacts were reported in QoL (GO-QOL, TED-QoL, and EQ-5D-5L), sleep (overall and Jenkins Sleep Score), depression (PHQ-9), anxiety (GAD-7), and work (WPAI). The greater the self-reported TED symptom severity, the larger the impact. Respondents reported that in the last month they were “seriously limited” in multiple essential activities, such as reading (47%), using electronic devices (43%), doing household chores (36%), being outside (29%), and driving (25%). Over 80% are worried about their symptoms returning/worsening regardless of prior treatments. A majority (66%) of respondents are currently being seen by a physician for their TED, commonly an ophthalmologist (49%), oculoplastic surgeon (43%), and/or endocrinologist (31%) and most want to discuss QoL/impacts in addition to symptoms with these physicians.Conclusions: TED is a chronic condition with persistent effects on QoL and mental health. As the TED treatment landscape continues to evolve, increased understanding of TED’s impact on daily activities and mental health will improve multidisciplinary care and enable more informed treatment decisions. Presentation: Monday, July 14, 2025

Source: Journal of the Endocrine Society