Survey: Quality of life remains low in chronic thyroid eye disease
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Survey data show that the symptom burden of thyroid eye disease persists during the chronic phase of the disease, with most patients reporting continued low quality of life even after systemic glucocorticoid therapy or surgery.
“Although it is widely understood that thyroid eye disease has a significant burden on patients who are in the acute phase, the impact of the disease on patients who have progressed into the chronic phase is less recognized,” Kimberly P. Cockerham, MD, FACS, adjunct clinical associate professor in the department of ophthalmology, Stanford University School of Medicine, told Healio. “We conducted this survey to better understand how thyroid eye disease affects patients during the chronic phase of disease, when inflammation may slow or stop, but signs and symptoms often remain.”
Cockerham and colleagues analyzed survey data from 100 adults with inactive or chronic thyroid eye disease (mean age, 45 years; 47% women; 81% white; 13% current smokers; mean total thyroid eye disease duration, 5.8 years). Quality of life was measured using the Graves’ ophthalmopathy quality of life instrument, with scores ranging from 0 (worst) to 100 (best), with a score between 90 and 100 considered normal. Researchers stratified patients by overall quality of life score: low (≤ 59), middle (50-75) and high ( ≥75).
At the time of the survey, mean overall quality of life score was 60.5. The mean appearance subscore was 58.6 and the mean visual function subscore was 62.3. Additionally, 42% of patients reported anxiety and/or depression.
Patients with the worst quality of life scores reported the highest number of thyroid eye disease signs and symptoms; specifically, orbital pain, blurry vision, light sensitivity and diplopia most influenced quality of life, according to researchers.
At thyroid eye disease diagnosis, 57% of respondents reported dryness and grittiness, 54% reported pain behind the eyes, 49% reported headache and 48% reported light sensitivity. However, even during the chronic phase of thyroid eye disease, 47% of respondents reported persistent dryness and grittiness, 25% pain behind the eyes, 33% headache and 27% light sensitivity.
Within the cohort, 25 patients were treated with oral or IV glucocorticoid therapy during the active phase of disease. Quality of life scores did not differ between those who were or were not treated with glucocorticoids; however, those treated with IV glucocorticoids had a lower quality of life score. Surgery similarly was not associated with improved quality of life during the chronic phase of thyroid eye disease.
“It was striking to find that the quality of life of patients in the chronic phase of 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,” Cockerham said. “This is contrary to traditional thinking that once a patient progresses to the chronic phase of thyroid eye disease, their symptoms start to diminish, and overall quality of life improves.”
Cockerham said clinicians should be aware that, even in the chronic phase, thyroid eye disease can significantly impact patient quality of life and cause mental health challenges, such as anxiety or depression.
“By asking patients how thyroid eye disease symptoms impact various aspects of life, such as sleep, work and social interactions, physicians can better understand the full impact of the disease and ultimately make more informed treatment decisions to help their patients,” Cockerham said.
For more information:
Kimberly P. Cockerham, MD, FACS, can be reached at cockerhammd@gmail.com.
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Cockerham K, et al. Abstract #129. Presented at: North American Neuro-Ophthalmology Society Annual Meeting; Feb. 20-23, 2021 (virtual meeting).
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