Health-related quality of life (HQOL) is a concept that aims to understand the totality of an individual's experience of their disease state. This can include the physical, psychosocial, emotional, and psychological effects of a disease state. A complex and multifactorial concept, HQOL can be challenging to measure accurately and reliably. Thyroid eye disease (TED), as a multifaceted physically debilitating and facial disfiguring disorder, presents unique challenges and opportunities in the measurement of HQOL. Multiple distinct tools have been developed for this purpose, each has been constructed, assessed, and utilized. This discussion surveys the landscape of TED-related QOL measurement and presents challenges for the future. Clinicians and clinical researchers should implement TED-related QOL measurement as part of routine TED care and as a primary outcome in TED clinical trials. We recommend utilizing the Graves' ophthalmopathy (GO)-QOL routinely in clinical practice and as a primary outcome in TED clinical trials. If the GO-QOL is too time-consuming or in mild TED, a faster alternative is the TED-QOL.
Keywords: measurement; patient reported outcomes; quality of life; thyroid eye disease.
© The Author(s) 2022. Published by Oxford University Press on behalf of the Endocrine Society.