Nearly Three-fourths of TED Patients Say Symptoms Have Moderate or Major Impact on Daily Life

The findings from this survey underscore the importance of integrating psychological assessments into routine management and fostering deeper patient-physician communication to improve overall care and inform future treatment development. Photo: Michael Richard, MD. Click image to enlarge. Thyroid eye disease (TED) can be visually debilitating and cosmetically disfiguring, as symptoms vary in severity and can lead to drastically impaired quality of life (QoL), ability to work and mental health. Recently, a survey was developed to characterize impact of TED on QoL, mental health, activities of daily living, sleep, work and treatment experience. The results of this survey underscore the substantial and multifaceted burden TED places on people across a broad range of symptom durations and severities—especially depression, anxiety and sleep—reinforcing that TED extends well beyond its visible signs and symptoms. The results were published in Ophthalmology and Therapy.The survey, conducted in July and August 2024, 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, the mean age was 50 (range 30 to 82) and 74% were women.Most (93%) reported experiencing symptoms of TED within the prior month, 23% categorized their symptoms as mild in severity, 58% moderate and 18% severe. The mean number of symptoms experienced was six at any time and three 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. Depression and anxiety were prevalent, especially among those with moderate to severe symptoms.Sleep disturbances were frequently reported and correlated with symptom severity. Additionally, many working participants reported significant impairment in productivity and absenteeism due to TED.Even individuals with mild symptoms reported high levels of anxiety, often linked to concerns about symptoms worsening or returning. Over 80% said they worry about their symptoms returning/worsening regardless of treatments and most want to discuss QoL impacts with their physicians.“Notably, although participants reporting mild symptoms in the prior month described relatively low levels of depression, nearly half (46%) still reported some degree of anxiety, potentially reflecting ongoing concern about symptom recurrence or worsening,” the authors explained in their paper. “In addition, most respondents reported avoiding intimacy, social relationships and professional interactions to some extent, behaviors that may exacerbate feelings of isolation, depression and anxiety.” Collectively, these findings highlight a potentially underrecognized burden and support integrating psychological assessment as a core component of TED management, the researchers suggested, potentially with currently available general questionnaires such as GAD-7 and PHQ-9.This survey also highlighted substantial negative effects of TED on participants’ ability to work, an important contributor to the overall economic burden of TED and its treatment.The researchers pointed out that these findings reinforce existing knowledge that TED symptoms substantially affect QoL, mental health and daily activities while also highlighting specific burdens and patient perspectives that may be missed in current clinical practice and research. “For example, difficulty using electronic devices emerged as the most frequently impaired daily activity, despite not being included in current TED-specific QoL measures,” they wrote in their paper. “Similarly, sleep disturbances, rarely reported in earlier TED studies but known to worsen QoL and impair daily activities, also increased with symptom severity, underscoring the importance of assessing sleep as part of TED management.”While 62% of patients were satisfied with their care, most expressed a strong desire to discuss more than just clinical symptoms with their physicians, specifically requesting conversations about QoL, eye pain, sleep quality and daily functionality.The results of the survey highlight the impact 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. “Recognition of the broader range of TED impacts can guide therapeutic decision-making, enhance the development of truly patient-centered research and care pathways, inform the development and evaluation of new therapeutics, and improve overall care for people living with TED,” the authors concluded in their paper.Click here for the journal source. Abrams JG, Gustafson C, Danese SR, et al. Impacts of thyroid eye disease (TED), beyond the signs and symptoms: results from the elevaTED patient survey. Ophthalmol Ther. June 10, 2026. [Epub ahead of print.] This article was developed by the editorial staff in conjunction with experts in the field. In the process, AI may have been among the editorial tools used to meet the goals of human editors, who approved all content.