“People living with Thyroid Eye Disease (TED) often experience long-term functional, psychosocial, and economic burdens, including the inability to work and perform activities of daily living, and in some cases, it can lead to blindness,” explains Yao Wang, MD. “Understanding how physicians perceive quality of life (QOL) in patients with TED is particularly important, because QOL factors into treatment decisions.” While the effect of TED on QOL has been studied in Europe, data are lacking on any association among patients in the United States. Therefore, Dr. Wang and colleagues sought to examine physician perceptions of patient QOL in a large group of US patients with TED.

A Survey of Endocrinologists & Ophthalmologists

TED is a serious, progressive, and vision-threatening rare autoimmune disease, causing pain, eye bulging, double vision, and facial disfigurement. In an effort to better understand how US physicians perceive the QOL of their patients with TED, the researchers conducted a survey in late 2018 of physicians in both endocrinology and ophthalmology specialties who regularly managed patients with TED. The analysis was accepted as a poster presentation at the virtual 2020 American Association of Clinical Endocrinologists Annual Scientific & Clinical Congress and was also published in a special supplement of Endocrine Practice.

A total of 181 physicians (73 endocrinologists and 108 ophthalmologists) responded to the online survey and reported de-identified insights from 714 total patients, up to four patients per physician, with a current diagnosis of moderate-to-severe TED. The average participant age was 49.4 years, and 43% of patients were reported to have severe TED.

The evaluation examined how physicians perceived the impact of TED on their patients’ QOL. Topics included overall QOL, ability to attend work/school, ability to function in social situations, ability to participate and enjoy day-to-day activities, ability to drive, and psychological well-being. Physician responses were scored on a Likert scale to rate the impact of TED from 1-7 (1 representing not at all impaired, 7 representing extremely impaired).


Big Impact on Mental Health

The overall QOL impact on TED patients, as reported by participating US endocrinologists and ophthalmologists, was 4.1 on the 1-7 Likert scale. Psychological well-being and ability to function in social situations were the most impacted (score ≥ 4), and patients with more severe disease reported significantly higher overall QOL impact, with nearly 90% of those with severe disease having a score of 4 or greater. When diving deeper in the psychological well-being impacts of TED, Dr. Wang and colleagues found that a large proportion of patients with TED “had nearly double the rates of anxiety and depression when compared with the general US adult population in 2017 (36.4% vs. 18.9%),” she says. Vision problems caused by TED, including strabismus, diplopia, and ocular pain, were some of the factors shown to have the highest impact on patients’ QOL. These factors are often also drivers of mobility restrictions or occupational disability.

Important Implications

The study team concluded that it is crucial to look beyond just the physical symptoms when working with patients with TED, adding that physicians should regularly assess the impact of the disease on overall QOL, including the patient’s ability to attend work/school, function in social situations, drive, and participate and enjoy day-to-day activities, as well as their overall psychological well-being.

“These findings reinforce the significant burden TED can have on patients’ overall well-being, including their ability to participate in daily activities and their mental health,” says Dr. Wang. “It is essential for endocrinologists and ophthalmologists who are treating, or will be treating, patients with TED to understand this significant impact and to not only assess the physical symptoms, but also the impact of the disease on overall QOL.”