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

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. What is unknown to date is for how long these problems can persist and what QoL domains are decreased in survivors of thyroid cancer.

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

The survivors will be invited for a clinical visit and will be asked to complete questionnaires. The proposed sample size is =2,320

We have prepared the study protocol and all study documents. We tested the CRF and the toxicity form.

The short-form of the SURV-100 was prepared together with the EORTC QLD Translation Unit.

Start with data collection after ethical approval.

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