Psychological Burden of Thyroid Eye Disease: A Patient and Caregiver Focus Group and Interview Study
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Sponsor
- Thomas Jefferson University
- Enrollment
- 20
- Locations
- 1
- Primary Endpoint
- 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.
Study Overview
Brief Summary
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.
Detailed Description
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.
Study Design
- Study Type
- Observational
- Observational Model
- Cohort
- Time Perspective
- Cross Sectional
Eligibility Criteria
- Ages
- 18 Years to — (Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Age 18 and older
- •Clinical diagnosis of Thyroid Eye Disease (patients) OR serving in a caregiving role for someone with a clinical diagnosis of Thyroid Eye Disease (caregivers)
Exclusion Criteria
- •Inability to consent or to engage in treatment in English
- •Presence of psychotic disorder or symptoms
- •Presence of psychiatric disorders that interfere with the participation of the study, judged by the study or treating clinician.
- •Presence of other medical conditions that interfere with participation in the study, judged by the study or treating clinician
Arms & Interventions
patients living with TED and their loved ones
interviews, focus groups & completion of questionnaires by patients living w TED and their loved ones
Intervention: focus groups and individual interviews as well as filling out questionnaires (Other)
Outcomes
Primary Outcomes
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.
Time Frame: 3 months
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.
Secondary Outcomes
No secondary outcomes reported