Skip to content

TFI Thyroid Eye Disease Survey

Dear Patients,

Thyroid Federation International is interested in understanding patients’ experiences with Thyroid Eye Disease and we have designed a short survey for you to complete.

It is entirely voluntary to take part in this survey.
If you decide to take part, please answer all the questions.

The data collected in this survey are completely anonymous. No personal identifiable information will be collected and the information you choose to provide in this study cannot be connected back to you. Results from this survey will help us gain information to prepare a White Paper on Thyroid Eye Disease. The results will be published and presented at research conferences through anonymous data.

Thank you in advance for your time and contribution!


1.I agree to participate in this survey.
Please choose one of the following answers:
About TED
2.How long have you had TED?
3.What stage of the disease are you at? (check all that apply):
Pain
4.How intense do you regard eye pain to be?
5.How often do/did feel eye pain?
6.How would you describe the eye pain? (Select all that apply)
7.How disturbing do you regard eye pain to be?
8.How does pain affect daily activities?
9.How does pain affect sleep?
10.How does pain affect work?
11.How does pain affect mental health?
For this question, please enter your answer in the box.
12.At what point does pain become “unmanageable”? Please specify:
Treatment Administration Preferences (On-Body-Injector (OBI) versus Intravenous (IV))
For each statement, please tick the box that applies the most to you.
13.What treatment do you prefer? Please select one option:
14.Does the reported treatment preference change if On-Body-Injector (OBI) is done at a clinic instead of home?
15.When choosing between On-Body-Injector (OBI) or intravenous (IV), what is the primary reason for selecting it:
16.Apart from convenience, what other reasons make you choose between On-Body-Injector (OBI) or intravenous (IV)?
17.Do you think there are differences in administration preference between healthcare professionals and patients?
Delayed or missed diagnosis
18.Did you experience any delays before receiving a diagnosis?
19.How long did it take to receive a diagnosis?
Patient advocacy and financial considerations
20.When did you begin advocating for yourself more actively? If there was a specific moment, was it related to:
For this question, please enter your answer in the box.
21.What aspects of the disease encouraged you to look for different or additional treatments? Please specify:
22.Are you willing to pay out-of-pocket for treatment?
For this question, please enter your answer in the box.
23.At what point in the disease would you consider paying for the treatment? Please specify:
Barriers to treatment
24.Have you experienced any barriers in getting treatment for Thyroid Eye Disease?
(Select all that apply)
25.If you experienced barriers, how did these affect the start of your treatment?