Severe Thyroid Eye Disease in the US: A National Perspective

Background: Thyroid eye disease (TED) is an unpredictable autoimmune inflammatory disease which can be sight-threatening, debilitating, and disfiguring. The majority of patients have mild, self-limited TED, 20-30% of patients experience moderate/severe disease, and 3-5% may develop sight-threatening disease, such as CON or exposure keratopathy. Surgical intervention is commonly necessary for patients with moderate/severe stable disease or sight-threatening disease, however, there is little data on the prevalence of TED requiring surgical interventions. Objective: To document the number of surgical procedures for thyroid eye disease in the US and evaluate the associated costs of these interventions. Methods: National Ambulatory Surgery Sample (NASS) is the largest ambulatory surgery database, representing approximately 14 million ambulatory surgeries performed annually in a hospital setting in the US. Data from 2,699 hospital-owned facilities located in 31 States and the District of Columbia, approximating a 63-percent stratified sample of U.S. hospital-owned facilities performing selected ambulatory surgeries are available for analyses. Data on clinical procedures and diagnoses, disposition of the patient, expected source of payment, and total charges, as well as geographic, hospital-owned facility, and patient characteristics are collected. For the purposes of this study, TED was identified by concomitantly occurring ICD 10 codes of thyroid disease and ICD-10 codes for eye manifestations of thyroid eye disease. CPT codes were used to identify eye surgeries performed in these patients. The coding algorithms were developed by consensus of three ophthalmic surgeons. Results: In 2018, a total of 1,991 patients with TED required eye surgery, with a national prevalence of 0.6 per 100,000 population. Mean age at surgery was 56.2 years (95% Confidence Interval (CI) 55.3-57.2). Women comprised 73% (1455 women and 536 men) of TED patients who underwent surgery. The average charges for each surgical encounter were $21,875 (95% CI $19,066-$24,684). Total charges for TED surgery in the US totaled over 43.5 million annually. While many patients had private insurance (49.7%), Medicare (31%) and Medicaid (13%) were also significant sources of reimbursement. Of all TED-related surgeries, 93% were conducted in teaching hospitals. Only 0.2% of surgeries were conducted in non-urban rural settings. Conclusion: In the US, severe TED requiring surgery, although uncommon, has significant economic impact. Further research is warranted to better understand the natural history of TED that may inform treatment pathways which may prevent complications needing surgery.