Survey: Thyroid Eye Disease Reduces Quality of Life Beyond Acute Phase

February 25, 2021
Gianna Melillo

Gianna is an associate editor of The American Journal of Managed Care® (AJMC®). She has been working on AJMC® since 2019 and has a BA in philosophy and journalism & professional writing from The College of New Jersey.

A new survey conducted by Horizon Therapeutics highlighted the negative impacts thyroid eye disease have on patients’ quality of life, finding effects often continue beyond the acute disease phase and into a chronic phase.

A new survey conducted by Horizon Therapeutics highlighted the negative impacts thyroid eye disease (TED) have on patients’ quality of life (QOL), finding effects often continue beyond the acute (active) disease phase and into a chronic (inactive) phase.

Survey results were presented at the North American Neuro-Ophthalmology Society 2021 Virtual Annual Meeting, which took place February 20-23, 2021.

TED is a rare condition where the muscles and fatty tissues behind the eye become inflamed, causing the eyes to be pushed forward and bulge outward (proptosis). After the initial acute phase, TED changes to a chronic phase where inflammation may ease or stop, but signs and symptoms can persist. The disease often occurs in individuals living with hypertension or Graves’ disease and in some cases can lead to blindness.

Currently, teprotumumab (Tepezza), a biologic produced by Horizon Therapeutics Ireland DAC, is the only FDA-approved drug for TED. Teprotumumab it is a targeted inhibitor of the insulin-like growth factor-1 receptor administered to patients once every 3 weeks for a total of 8 infusions.

At the time of approval, a Horizon spokesperson said the treatment will cost $14,900 per vial, with full treatment over 6 months approximately 23 vials, and that the wholesale acquisition cost for that amount is $343,000, with an annual net realized price of $200,000.

Overall, survey findings underscore the disease’s persistent burden on physical and mental health during both the active and inactive phases, researchers wrote. A total of 100 patients with chronic TED at various levels of severity completed the online survey, while patients’ characteristics and TED parameters were measured at the time of diagnosis and after being told their TED was in the chronic phase.

Using the Graves’ Ophthalmology QOL Questionnaire (GO-QOL) instrument, patients reported response with scores ranging from 0 (worst) to 100 (best). A score between 90 and 100 was considered normal and scores were stratified as low (< 50), middle (50-75) and high (> 75).

Researchers found GO-QOL scores averaged approximately 60 points across overall score, appearance sub-score and visual function sub-score.

Additional findings included:

  • Patients with the worst QOL reported the highest number of TED signs and symptoms
  • Orbital pain, blurry vision, light sensitivity and diplopia had the most influence on QOL
  • Ocular dryness/grittiness, light sensitivity, blurry vision and pain behind the eyes present during the acute phase commonly persisted into the chronic phase
  • 42% of respondents reported anxiety or depression
  • Anxiety incidence increased as QOL declined (17% in the high QOL group vs. 48% in the low QOL group)

Patients also reported interventions such as surgery and use of oral or intravenous glucocorticoids did not lead to a higher QOL during chronic TED.

“The results of this survey challenge our traditional understanding of the phases of TED and its impact on patients,” said Kimberly Cockerham, MD, a 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 TED was reported to be significantly impaired and nearly identical to scores seen in clinical trials of patients with acute, moderate-to-severe disease.”

In addition, results of the survey “broaden our understanding of the short- and long-term challenges people living with TED experience, including how symptoms impact daily life over the entire course of the disease,” said Jeffrey W. Sherman, MD, FACP, executive vice president and chief medical officer at Horizon. “We will use these learnings to inform our continued research and to advance the way we communicate with the TED community,” he said.