This post has been updated on 30/11/2020, with details of the finalised survey, which is now available to complete.
Thyroid Federation International (TFI) and four leading international endocrinologists (Petros Perros- UK, Laszlo Hegedus - Denmark, Enrico Papini - Italy, and Endre Nagy- Hungary) have come together to develop and implement an online questionnaire to understand the needs and experiences of those living with hypothyroidism and, in particular, patients' satisfaction with treatment of hypothyroidism and the identification of any unmet patient needs. (Please see the Research Aims and how to get involved at the bottom of this post).
TFI has agreed to provide input and assistance with recruitment and distribution of the Survey. As TFI members, The Thyroid Trust are supporting this work.
In June 2020 we shared a pilot questionnaire which consisted of a Pilot Testing for approximately 300 English speaking patients to ensure that the questions were accurate and easily understood.
The survey is for all hypothyroid patients, whatever the cause of their condition, for example:
Huge thanks to everyone who very kindly took the time to participate in the pilot survey, which is now closed. Now it's time to complete the finalised version.
Please start by reading further information and begin the survey from the TFI website.
FYI we have some questions about some aspects of this survey, which we have sent to the researchers and TFI. If you'd like to share any questions or feedback you may have with us, as well as the researchers, please feel free, but it is most important that you give your views to them.
The research will seek to explore the following key research questions:
The researchers want to hear from 10,000 patients before the end of January 2021 - please be one of the 10,000 and help shape clinicians' understanding of patient experiences of hypothyroidism!
This blog is by members of Thyroid Trust Friends Network who have signed up to our Ground Rules and blogging guidelines. Please get in touch if you'd like to write something for possible publication on our site.