Photo Credit: Jim Doberman

The following is a summary of “SAT466 Inactive Thyroid Eye Disease Patient Journey,” published in the October 2023 issue of Ophthalmology by Cockerham et al.

Long-term data on US patients with thyroid eye disease (TED) is limited. A 2020 online survey identified 100 patients (47% female) with inactive TED, with an average of 2.7 years since active TED diagnosis.

Researchers conducted a retrospective study to characterize the transition of inactive TED patients from active/inflammatory to inactive/non-inflammatory disease status. They gathered patient demographics, diagnoses, symptom prevalence over time, and the number of healthcare providers (HCPs) seen and treatments through an online survey.

The results showed that of 100 patients, 98 received a diagnosis (Dx) of thyroid autoimmunity. Active TED was typically diagnosed 2.2 years after the thyroid diagnosis (N=98), around 2.1 years after initial eye symptoms, with an average of 5.7 TED symptoms. 

Patients consulted with an average of 2 HCPs before receiving a diagnosis, most commonly ophthalmologists (69%), endocrinologists (49%), and primary care physicians (45%). Patients typically consulted with 2 different HCP specialties within the past year (ophthalmologists, endocrinologists, and PCPs) by the time TED was deemed inactive/non-inflammatory, experiencing 3.4 TED symptoms with an average of 19.7 visits/year and using 2 prescribed medications for TED. 

For inactive TED patients, the most common over-the-counter remedies were eye drops (50%) and pain relievers (ibuprofen/naproxen [41%] and acetaminophen [33%]). Prescription eye drops (27%) and topical steroids (22%) were commonly used. Oral and intravenous steroids were used by 8% and 3% of patients. Orbital decompression (52%) and strabismus surgery (30%) were the most common surgical procedures among patients with TED who underwent surgery (27%).

Researchers concluded that TED patients face a long-term journey of symptoms, healthcare visits, and treatments. Earlier diagnosis and ongoing care were found crucial.

Source: academic.oup.com/jes/article/7/Supplement_1/bvad114.1940/7289721?searchresult=1