New Survey Assessment Finds Debilitating Impact of Thyroid Eye Disease (TED) on Quality of Life Continues Well Beyond Acute Disease into Chronic Phase

New Survey Assessment Finds Debilitating Impact of Thyroid Eye Disease (TED) on Quality of Life Continues Well Beyond Acute Disease into Chronic Phase


-- Results presented at NANOS 2021 Annual Meeting show persistent burden on physical and mental health --

DUBLIN--(BUSINESS WIRE)--Feb. 22, 2021-- Horizon Therapeutics plc (Nasdaq: HZNP) today announced results of a new Thyroid Eye Disease (TED) quality of life (QOL) assessment presented at the North American Neuro-Ophthalmology Society (NANOS) 2021 Virtual Annual Meeting. Findings demonstrate that TED not only has a significant burden on patients during the acute (active) phase of the disease, but that this burden continues well into the chronic (inactive) phase.

TED is a rare autoimmune disease that begins with an acute phase where inflammatory signs and symptoms, such as eye pain, swelling, proptosis (eye bulging) and diplopia (double vision), progress over time. The disease then changes to a chronic phase where inflammation may slow or stop, but signs and symptoms often remain.

“The results of this survey challenge our traditional understanding of the phases of Thyroid Eye Disease and its impact on patients,” said Kimberly Cockerham, M.D., adjunct clinical associate professor, Department of Ophthalmology, Stanford University School of Medicine and primary author of the study. “A common belief is that once a patient progresses to the chronic phase of the disease, symptoms diminish and the impact on quality of life improves. But in this survey, the quality of life of patients with chronic Thyroid Eye Disease was reported to be significantly impaired and nearly identical to scores seen in clinical trials of patients with acute, moderate-to-severe disease.”

The online survey assessed 100 patients with chronic TED at various levels of severity. Patient characteristics and TED parameters were measured both at the time of diagnosis and after being told their TED was in the chronic phase. QOL was measured using the Graves’ Ophthalmopathy Quality of Life Questionnaire (GO-QOL) instrument. Scores range from 0 (worst) to 100 (best), with a score of 90-100 considered normal. Scores were stratified as low (less than 50), middle (50-75) and high (greater than 75).

Key findings include the following:

  • GO-QOL scores averaged approximately 60 points across examined categories (overall score, appearance sub-score and visual function sub-score).
  • Patients with the worst QOL reported the highest number of TED signs and symptoms, specifically with orbital pain, blurry vision, light sensitivity and diplopia having the most influence on QOL.
  • Several symptoms present during the acute phase commonly persisted into the chronic phase, including ocular dryness/grittiness, light sensitivity, blurry vision and pain behind the eyes.
  • Nearly half (42%) of respondents reported anxiety or depression.
  • Anxiety also increased as QOL declined (17% in the high QOL group vs. 48% in the low QOL group).
  • Importantly, interventions such as surgery and use of oral or IV glucocorticoids did not lead to a higher QOL during chronic TED.

“This survey broadens our understanding of the short- and long-term challenges people living with Thyroid Eye Disease experience, including how symptoms impact daily life over the entire course of the disease,” said Jeffrey W. Sherman, M.D., FACP, executive vice president, chief medical officer, Horizon. “Over the last several years, we’ve spoken with many people living with Thyroid Eye Disease as well as their physicians about the ongoing struggles that continue into the chronic phase of the disease, and this study adds to what we’ve been hearing. We will use these learnings to inform our continued research and to advance the way we communicate with the Thyroid Eye Disease community.”

About Thyroid Eye Disease (TED)

TED is a serious, progressive and vision-threatening rare autoimmune disease.1 TED often occurs in people living with hyperthyroidism or Graves’ disease, but it is a distinct disease that is caused by autoantibodies activating an IGF-1R-mediated signaling complex on cells within the retro-orbital space.2,3 This leads to a cascade of negative effects, which may cause long-term, irreversible damage. As TED progresses, the serious damage it can cause includes proptosis (eye bulging), strabismus (misalignment of the eyes) and diplopia (double vision) – and in some cases can lead to blindness.4,5

About Horizon

Horizon is focused on researching, developing and commercializing medicines that address critical needs for people impacted by rare and rheumatic diseases. Our pipeline is purposeful: we apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, please visit and follow us on Twitter, LinkedIn, Instagram and Facebook.


  1. Barrio-Barrio J, et al. Graves' Ophthalmopathy: VISA versus EUGOGO Classification, Assessment, and Management. J Ophthalmol. 2015;2015:1-16.
  2. Weightman DR, et al. Autoantibodies to IGF-1 Binding Sites in Thyroid Associated Ophthalmopathy. Autoimmunity. 1993;16(4):251-257.
  3. Pritchard J, et al. Immunoglobulin Activation of T Cell Chemoattractant Expression in Fibroblasts from Patients with Graves’ Disease Is Mediated Through the Insulin-Like Growth Factor 1 Receptor Pathway. J Immunol. 2003;170:6348-6354.
  4. Bartalena L, et al. The 2016 European Thyroid Association/European Group on Graves' Orbitopathy Guidelines for the Management of Graves' Orbitopathy. Eur Thyroid J. 2016;5(1):9-26.
  5. McKeag D, et al. Clinical Features of Dysthyroid Optic Neuropathy: a European Group on Graves' Orbitopathy (EUGOGO) survey. Br J Ophthalmol. 2007;91:455-458.


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Source: Horizon Therapeutics plc