OBJECTIVES: Thyroid eye disease (TED) is a debilitating, sight-threatening orbital inflammatory autoimmune disorder caused by the activation of pathogenic anti–thyroid-stimulating hormone receptor autoantibodies. We assessed the scientific literature to identify evidence gaps related to the disease burden and treatment of TED.

METHODS: A structured review of literature published from May 5, 2013 to May 5, 2023 was conducted in PubMed, Embase, and the Cochrane Library using a predefined search strategy for articles on epidemiology; clinical, humanistic, and economic burden; and treatment patterns of TED. Online searches were also conducted for health technology assessments, prescribing information, treatment guidelines, and clinical trials.

RESULTS: We reviewed 209 articles. The lack of standardized diagnostic criteria, as well as geographic and ethnic variations, present challenges in diagnosis and epidemiological estimates of TED. Studies utilizing quality of life (QOL) questionnaires provide insights into the multifaceted humanistic burden; however, longitudinal QOL data are limited. Existing studies show a significant economic burden related to TED, with over $130 million in direct costs, primarily due to hospitalizations, emergency visits, and treatment. However, the long-term impact on healthcare costs has not been adequately studied. Treatment options may include pharmacological or surgical approaches. Globally, steroids are the most utilized treatment for active, moderate-to-severe TED. Intravenous glucocorticoids are considered standard first-line treatment. Studies demonstrate patients’ dissatisfaction with surgical outcomes, which warrants development of new therapeutic options that are more efficacious or improve on surgical outcomes. Monoclonal antibodies (e.g., teprotumumab, rituximab, and tocilizumab) are associated with numerous side effects, and studies on their efficacy in patients with TED reported conflicting results.

CONCLUSIONS: We identified several gaps in the literature including the lack of standardized diagnostic criteria for TED, the lack of robust long-term data on current TED therapies, and the need for additional clinical, humanistic, and economic burden studies in patients with TED.