Long-term quality of life and late toxicity in thyroid cancer survivors (LoQoT)

Background: Thyroid cancer and its treatments may affect a variety of central body functions as well as mental health and social relationships. Therefore, thyroid cancer can cause significant quality of life (QoL) impairments. Unknown to date is for how long these problems can persist and what QoL domains in survivors of thyroid cancer are decreased. 

Objectives: The aim of this study is to identify how thyroid cancer survivors experience their disease-specific QoL and what toxicities they suffer from, taking pre-existing and concurrent comorbidities into account. Specifically, we aim to answer the following questions: 

• What are the QoL domains most affected in the long-term, from the perspective of the survivors?  
• What are predictors of poor QoL in these domains?  
• Are self-reported dry mouth, teeth problems, fatigue, or swallowing worse than in the age- and sex-matched general population? 
• How often are hypoparathyroidism, functional vocal cord paresis/paralysis, teeth decay, xerophthalmia, lacrimal duct stenosis, dysgeusia, osteoporosis, osteopenia, infertility, or cardiovascular problems present? 
• Are there certain clusters of long-term QoL issues and late effects in thyroid cancer survivors? 
• By country: How are late effects treated and how (systematic) are they assessed? (where are the health care deficits?) 

Procedures: The survivors will be invited for a clinical visit and they will complete questionnaires. 

Sample size: n=2,320 

First patient was enrolled in February 2026. We have started enrolment at two sites and several others are ready to start.  Other sites are still working on ethical approval and contracting issues.

We are at the start of the enrolment phase.

Data collection is expected to run for approximately 2.5 years.

We want to find out how people who have experienced thyroid cancer are doing a long time after the diagnosis.