Please ensure JavaScript is enabled for purposes of website accessibility The Emotional Side of Thyroid Eye Disease | An HCP Resource

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EXPLORE THE IMPACT OF THYROID EYE DISEASE (TED) ON QUALITY OF LIFE

The real impact of TED goes beyond the eyes

The visible and nonvisible signs and symptoms of TED can have a debilitating impact on your patients’ daily activities, emotional well-being, and quality of life1,2

This is a very difficult disease that causes tremendous impact to your eyes, your ability to perform daily activities, and your emotional well-being.”

— TED Patient

THE 2022 AMERICAN THYROID ASSOCIATION/EUROPEAN THYROID ASSOCIATION CONSENSUS STATEMENT RECOMMENDS ASSESSING THE PHYSICAL AND PSYCHOSOCIAL IMPACT OF TED.3

TED can have a wide-ranging impact on patients’ lives—
regardless of disease activity or duration4,5

*Data from 2 clinical trials of 171 patients with moderate to severe, recent-onset (≤9 months) TED with high-level inflammation (Clinical Activity Score ≥4) were included.4

†100 patients identified as currently experiencing non-inflammatory/inactive TED by a healthcare professional completed an online survey in January 2020.5

Things spatially seemed off. Going downstairs, I’d see double. It was scary and it just started getting worse and worse.”

— Molly, TED Patient

The signs and symptoms of TED can cause disruptions and distress for your patients6-8

~7x

more likely to take sick leave6‡

63%

experienced emotional distress7§

71%

felt their self-confidence had been negatively affected8‖

‡Based on a longitudinal register study of 862 patients with nontoxic goiter, hyperthyroidism, Graves’ orbitopathy (GO), autoimmune hypothyroidism, or other thyroid diseases observed between 1994–2011. The referenced study included patients with a wide variety of thyroid diseases, however, the statistic reported here (~7x more likely to take sick leave) is specific to patients with Thyroid Eye Disease/Graves’ orbitopathy and reflects increased incidence of absence within the first year of diagnosis.6

§Based on an online 62-question survey of 443 TED patients, 394 of which responded to this question.7

‖Based on a QOL survey of 128 patients with Graves’ ophthalmopathy (GO) in Brisbane, Australia, who were managed between 1992 and 2000.8

emotional-side-of-thyroid-eye-disease

Many TED patients suffer in silence, especially those who have had TED for a long time. Even if you feel your patients are communicating, research shows they often hold back

In one survey, about 3 in 5 TED patients (63%; n=116) found it difficult to tell their doctor about the impact TED has on their daily lives9

More than half (59%; n=116) of TED patients rated their emotional well-being and quality of life as ”fair” or “poor” even when their symptoms were at their worst10

“It was never something I wanted to admit, but I started withdrawing and isolating myself. No matter what I did, my eyes continued to change.”

— TED Patient

Asking how TED affects their daily lives may lead to a more open conversation

What modifications have you had to make to daily activities like driving, sleeping, and working?

How has your experience with TED changed the way you feel about yourself?

How would you describe the appearance of your eyes?

Has living with TED restricted your social interactions? If so, in what ways?

HAVE YOUR PATIENTS WHO ARE EXPERIENCING SIGNS AND SYMPTOMS OF TED COMPLETE THE PATIENT INTAKE FORM TO HELP CONFIRM DIAGNOSIS AND ASSESS THE FULL IMPACT OF THE DISEASE.

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  • REFERENCES

    1. Kahaly GJ, Petrak F, Hardt J, Pitz S, Egle UT. Psychosocial morbidity of Graves’ orbitopathy. Clin Endocrinol (Oxf). 2005;63(4):395-402.
    2. Estcourt S, Vaidya B, Quinn A, Shepherd M. The impact of thyroid eye disease upon patients’ wellbeing: a qualitative analysis. Clin Endocrinol (Oxf). 2008;68(4):635-639.
    3. Burch HB, Perros P, Bednarczuk T, et al. Management of Thyroid Eye Disease: a consensus statement by the American Thyroid Association and the European Thyroid Association. Thyroid. 2022;32(12):1-32.
    4. Smith TJ, Hegedüs L, Lesser I, Perros P, Dorris K, Kinrade M, Troy-Ott P, Wuerth L, Nori M. How patients experience thyroid eye disease. Front Endocrinol (Lausanne). 2023 Nov 9;14:1283374.
    5. Smith TJ, et al. Assessment of the Thyroid Eye Disease-specific Graves’ Ophthalmopathy Quality of Life Questionnaire in Non-inflammatory or Inactive Thyroid Eye Disease
Patients. Presented at: American Association of Clinical Endocrinology, May 4-6, 2023.
    6. Nexo MA, Watt T, Pedersen J, Bonnema SJ, Hegedüs L, Rasmussen AK, Feldt-Rasmussen U, Bjorner JB. Increased risk of long-term sickness absence, lower rate of return to work, and higher risk of unemployment and disability pensioning for thyroid patients: a Danish register-based cohort study. J Clin Endocrinol Metab. 2014 Sep;99(9):3184-92.
    7. Park JJ, Sullivan TJ, Mortimer RH, Wagenaar M, Perry-Keene DA. Assessing quality of life in Australian patients with Graves’ ophthalmopathy. Br J Ophthalmol. 2004 Jan;88(1):75-8.
    8. Terwee CB, Gerding MN, Dekker FW, et al. Development of a disease specific quality of life questionnaire for patients with Graves' ophthalmopathy: the GO-QOL. Br J Ophthalmol. 1998;82(7):773-779.
    9. Data on File. Amgen, 2023.