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| Name | Class |
|---|---|
| Amgen | INDUSTRY |
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This interview study aims to look in depth at the quality of life of people living with TED and their caregivers, with emphasis on impact on mood, relationships, work/education, and leisure. The investigators plan to examine this through a two-part focus group followed by individual interviews. Participants will also complete self-report measures.
Thyroid Eye Disease (TED) is an autoimmune disorder in which eye muscles and fatty tissue behind the eye become inflamed and may cause scar tissue to form. Hallmark symptoms of TED include exophthalmos (eye bulging), strabismus (misaligned eyes), diplopia (double vision), dry or gritty eyes, eye pain, eye pressure, sensation of debris in the eye, red eyes, watery eyes, sensitivity to light, blurry vision, eyelid edema (puffy eyes), eyelid retraction, color vision loss, and vision loss. TED affects individuals diagnosed with this condition and their caregivers. This interview study aims to look in depth at the quality of life of people living with TED and their caregivers, with emphasis on impact on mood, relationships, work/education, and leisure. The investigators plan to examine this through a two-part focus group followed by individual interviews. Participants will also complete self-report measures.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| patients living with TED and their loved ones | interviews, focus groups & completion of questionnaires by patients living w TED and their loved ones |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| focus groups and individual interviews as well as filling out questionnaires | Other | focus groups and individual interviews as well as filling out questionnaires |
|
| Measure | Description | Time Frame |
|---|---|---|
| Understand the experience of people living with TED and of caregivers of people living with TED. The investigators aim to define the different facets of TED-specific psychological burden. | Understand the experience of people living with TED and of caregivers of people living with TED. Through semi-structured individual interviews, focus groups, polls during focus groups, and completion of a battery of standardized self-report measures of depressive symptoms (Beck Depression Inventory-II, Patient Health Questionnaire - 9), anxiety (Generalized Anxiety Disorder -7, Beck Anxiety Inventory), value-based living (Valued Living Questionnaire), and psychological flexibility (cognitive fusion questionnaire -13, acceptance and action questionnaire-2), the investigators aim to define the different facets of TED-specific psychological burden as experienced by patients and by loved ones of people living with TED. | 3 months |
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Inclusion Criteria:
Exclusion Criteria:
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People living with TED and their loved ones
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Thomas Jefferson University Hospital | Philadelphia | Pennsylvania | 19107 | United States |
de-identified data to be shared w patrick smith, phd mph for statistical analyses
10/1/2025-12/31/2025
patrick smith, phd mph for statistical analyses
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| ID | Term |
|---|---|
| D049970 | Graves Ophthalmopathy |
| ID | Term |
|---|---|
| D015785 | Eye Diseases, Hereditary |
| D005128 | Eye Diseases |
| D006111 | Graves Disease |
| D005094 | Exophthalmos |
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| ID | Term |
|---|---|
| D017144 | Focus Groups |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| D009916 |
| Orbital Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D006042 | Goiter |
| D013959 | Thyroid Diseases |
| D004700 | Endocrine System Diseases |
| D006980 | Hyperthyroidism |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |