SAT466 Inactive Thyroid Eye Disease Patient Journey

Disclosure: K. Cockerham: Consulting Fee; Self; Horizon Therapeutics plc, Viridian. T.J. Smith: Consulting Fee; Self; Horizon Therapeutics plc, Viridian, Lundbeck. Other; Self; US patents covering the use of IGF-1 receptor inhibitors in TED which are held by UCLA and the Lundquist Institute. E. Conrad: Employee; Self; Horizon Therapeutics plc. Stock Owner; Self; Horizon Therapeutics plc. R.J. Holt: Employee; Self; Horizon Therapeutics plc. Stock Owner; Self; Horizon Therapeutics plc. Objective: Limited long-term data are available on US patients with thyroid eye disease (TED). From an online survey conducted in January 2020 of patients who were assessed by their healthcare providers (HCPs) as having inactive TED, 100 patients (age 45.2 ± 7.6 years, 47% female) with current non-inflammatory/inactive TED were identified with an average duration of 2.7 years after active TED diagnosis.(1) Here we examined the journey of these TED patients from active/inflammatory to inactive/non-inflammatory disease status. Methods: We collected patient demographics, diagnoses and symptom prevalence over time, number of HCPs seen, and treatments from an online survey conducted in January 2020. Results: Of 100 patients, 98 had a diagnosis (Dx) of thyroid autoimmunity. Active TED was typically diagnosed within 2.2 years of the thyroid Dx (N=98), approximately 2.1 years after first eye symptoms with an average of 5.7 TED symptoms while visiting a mean of 2 HCPs between first TED symptoms and Dx. Mostly ophthalmologists (69%), endocrinologists (49%), and primary care physicians (PCP; 45%) were consulted. By the time TED was assessed as inactive/non-inflammatory (2.7 years after active TED diagnosis(1)), patients typically visited 2 different HCP specialties within the past year (ophthalmologists 61%, endocrinologists 51%, and PCP 32%) and were experiencing 3.4 TED symptoms with an average of 19.7 ± 31.7 visits/year (median: 6 visits/year, range: 1-160 visits/year) and 2 prescribed medications for TED. Over-the-counter eyedrops (50%) and pain relievers (ibuprofen/naproxen [41%] and acetaminophen [33%]) were the most commonly used for inactive TED patients. Prescription eyedrops (27%) and topical steroids (22%) were also commonly used in inactive TED. Oral and intravenous steroids were used in 8% and 3%, respectively. Among the 27% of patients with any surgical TED procedure, orbital decompression (14/27; 52%, mean age 38) and strabismus surgery (8/27; 30%) were the most commonly performed. Discussion/Conclusion: From this analysis, patients with active/inflammatory TED typically experience ∼ 3 years of symptoms, HCP visits, and treatments prior to inactive TED diagnosis. TED diagnosis is often delayed in the US. Approximately 5 years elapse from first TED eye symptoms. This and other recent data1 indicate that inactive TED is typically symptomatic, and patients continue to experience impaired quality of life, requiring specialized care/medication for symptom management. References: 1. Cockerham KP, et al. Ophthalmol Ther 2021;10(4):975-987. Presentation Date: Saturday, June 17, 2023