Understanding the experience of living with hypothyroidism

Today (25th May 2021) is World Thyroid Day and the start of a week of international awareness of thyroid conditions. Two common conditions associated with the thyroid are hypothyroidism (underactive thyroid) and hyperthyroidism (overactive thyroid).

Hypothyroidism affects around 2% of the UK population, with women five to ten times more likely to have it. Hypothyroidism occurs when the thyroid gland produces less thyroid hormone than it should, causing a range of symptoms such as tiredness, feeling cold and weight gain. These symptoms can be controlled with medication but can interfere with a person’s quality of life, which is where our research aims to help.

We are working with four leading international thyroid experts, Petros Perros (UK), Laszlo Hegedus (Denmark), Enrico Papini (Italy) and Endre Nagy (Hungary) to understand the treatment, care, support needs, satisfaction, and quality of life of people over the age of 18 who have hypothyroidism.

What does the research involve?

We consulted with clinicians and patients on the development of a survey. We needed to ensure that the questions were robust and interpreted correctly. This was achieved by:

• Using our expertise to carry out a literature review.
• Cognitive testing of the survey with hypothyroid patients and amending according to feedback.
• Carrying out a pilot of the survey (completed in summer 2020) to test the methods and further improve the questions.

Once this was completed, we worked with Thyroid Federation International (TFI, a global network of patient support organisations) to coordinate the dissemination of the questionnaire globally. The survey was available for people to complete from 4th November 2020 to 1st March 2021 (15½ weeks). In addition to communications from TFI, the survey was advertised via social networks, newsletters and Google Ads. In total, we received 3915 responses from 68 countries.

What do we hope to learn?

The findings from the survey will help us better understand patient experiences of treatment and care and answer critical questions about:

• Satisfaction levels with treatment for hypothyroidism.
• The perceived treatment barriers and enablers for successful treatment.
• Whether associations can be drawn between treatment satisfaction and a range of factors (such as demographics/comorbidities/personality).

We will submit the results to journals, share them at conferences and publish them online. The insights will allow us to understand the self-reported symptoms and quality of life of hypothyroid patients, as well as treatment satisfaction.

If you have questions about this research, please contact us by email, take_part@PickerEurope.ac.uk, using ‘Hypothyroidism’ in the subject heading.

Funding for the project is provided by Institut BioChimique SA (IBSA), but they have not been involved in the study design, nor did the academic team receive any financial support from IBSA.