Quality of Life Assessment of Chronic Thyroid Eye Disease (TED) Patients in the United States

TED is an orbital autoimmune disease that causes pain, dysmotility, vision-impairment, facial alterations and other debilitating sequelae. Although improvement can occur as inflammation subsides, patients often have persistent discomfort, tearing, diplopia, and facial disfigurement that includes proptosis and eyelid retraction. These sequalae can severely impact quality of life (QOL).1-3 The current survey examined QOL in 100 chronic US TED patients.

Poster 129 Quality of life Assessment of Chronic Thyroid Eye Disease (TED) Patients in the United States Kimberly Cockerham1, Noel Stuertz2, Lissa Padnick-Silver2 1 Stanford Department of Ophthalmology, Stanford, California, USA, 2Horizon Therapeutics, plc, Lake Forest, Illinois, USA Introduction: TED is an orbital autoimmune disease that causes pain, dysmotility, vision-impairment, facial alterations and other debilitating sequelae. Although improvement can occur as inflammation subsides, patients often have persistent discomfort, tearing, diplopia, and facial disfigurement that includes proptosis and eyelid retraction. These sequalae can severely impact quality of life (QOL).1-3 The current survey examined QOL in 100 chronic US TED patients. Methods: Patients self-identified and described by physicians as having chronic, stable (inactive) TED completed an online survey in January 2020 regarding TED signs/symptoms/treatments and a TED-specific GO-QOL questionnaire (0–100, 100=highest QOL4). Patients were divided into categories of low (≤50, n=33), moderate (>50 but <75, n=37), and high (≥75, n=30) QOL to examine influencing factors. Results: 100 patients (47 women, 81 Caucasian, age: 45.2±7.6 years) were included. Patients reported an inactive TED duration of 3.0±4.6 years (range: <1 to 23 years), a total TED duration of 5.8±5.9 years, and an average of 20 doctor visits/patient/year. 34% had been diagnosed with anxiety, 28% with depression. 25% had been treated with corticosteroids, 5% with orbital radiation, and 27% with surgery (17% decompression, 8% strabismus, 5% lid) for TED. Mean overall GO-QOL score was 60.5±21.8 and vision- and appearance-related scores were 58.6±24.0 and 62.3±25.1, respectively. Patients with the lowest QOL scores more frequently reported hypothyroidism, anxiety, and suffered the highest number of TED signs/symptoms (average: 4.2). Pain, blurry vision, and diplopia were reported more often in the low vs. high QOL group. Further, the low QOL group had more doctor visits (low vs. high: 40 vs. 5 visits/person/year), a higher percentage with TED-specific surgical history (47% vs. 10%, p=0.002), and more disabled patients (15% vs. 0%). Conclusions: Chronic, stable (inactive) TED severely impacts QOL. In this cohort, periorbital pain, vision impairment, and anxiety impacted patients long after acute, progressive phase of disease subsided. References: Terwee C, et al. Eur J Endocrinol 2002;146:751-7. Terwee CB, et al. Orbit 2001;20:281-90. Kahaly GJ, et al. Thyroid 2002;12:237-9. Terwee CB, et al. Br J Ophthalmol 1998;82:773-9. Keywords: neuro-ophth & systemic disease (eg. MS, MG, thyroid), orbit/ocular pathology Financial Disclosures: K. Cockerham is on the Horizon Therapeutics Medical Advisory Board. Grant Support: The study was funded by Horizon. Contact Information: None provided. 286 | North American Neuro-Ophthalmology Society