Thyroid Cancer
Project summary
Background: Thyroid cancer and its treatments affect quality of life (QoL) across a variety of domains. The EORTC Quality of Life Group therefore developed a module specifically for this group of patients. This development started in 2013 with the identification of potential QoL issues and then testing their relevance to patients and health care providers (phase I and II). In 2015 and 2016, the provisional module was pilot tested (phase III) among 182 thyroid cancer patients. Now, the final validation (phase IV) was performed.
Objectives: The aim of the present study was to validate the EORTC QLQ-THY34 in a large international field study and to investigate the psychometric properties of its scales.
We investigated
– cross-cultural applicability and acceptability
– scale structure
– reliability, including test-retest and internal consistency
– validity, including construct, divergent and convergent validity
– sensitivity to change, responsiveness
– minimally important difference
– cross-cultural consistency of psychometric properties
Procedures: The EORTC QLQ-THY34 was administered to two groups of patients with thyroid cancer. Patients in Group 1 were approached three times to measure sensitivity to change. The data collection took place before treatment starts (t1), 6 weeks after the first day of initial treatment (t2), and 6 months after t2 (t3). Patients in Group 2 completed the questionnaires once (t1) (a minimum of 24 months post diagnosis) and a second time 1 week later (t2) to measure test-retest reliability.
Achievements
The module has completed the final phase IV of its development. Various psychometric properties were tested and the results are published.
The module is ready to be used in clinical studies.
For patients
We want to be able to tell how a patient who has thyroid cancer experiences his or her quality of life.
To be able to do that, we created a questionnaire. This is important for clinical studies because responses from different patients can then be combined easily, and the voice of the patients is heard. A group of experts from 20 countries worked on it together. We asked more than 400 patients with thyroid cancer how they feel about their life.
Publications
Phase I results:
Singer S, Husson O, Tomaszewska IM, Locati L, Kiyota N, Scheidemann-Wesp U, et al. Quality-of-Life Priorities in Patients with Thyroid Cancer: A Multinational European Organisation for Research and Treatment of Cancer Phase I Study. Thyroid. 2016;26(11):1605-13.
Phase III results:
Singer S, Jordan S, Locati L, Pinto M, Tomaszewska IM, Araújo C, et al. The EORTC module for quality of life in patients with thyroid cancer: phase III. Endocr Relat Cancer. 2017;24(4):197-207.
Büttner M, Locati L, Pinto M, Araújo C, Tomaszewska IM, Kiyota N, et al. Quality of life in patients with hypoparathyroidism after treatment for thyroid cancer. J Clin Endocrinol Metab. 2020;105(12):e4652-e60.
Phase IV results:
Singer S, Al-Ibraheem A, Pinto M, Iakovou I, Osthus A, Hammerlid E, et al. International phase IV field study for the reliability and validity of the European Organisation for Research and Treatment of Cancer Thyroid Cancer Module EORTC QLQ-THY34. Thyroid. 2023;33(9):1078-89.
Singer S, Sykiotis G, Pinto M, Iakovou I, Locati L, Østhus AA, et al. Score interpretation thresholds for the European Organisation for Research and Treatment of Cancer Thyroid Cancer Quality of Life Questionnaire (EORTC QLQ-THY34) An international prospective study. Endocrine;accepted.[SS3.1]
Singer S, Sykiotis GP, Al-Ibraheem A, Pinto M, Iakovou I, Osthus A, et al. The impact of electronic versus paper-based data capture on data collection logistics and on missing scores in thyroid cancer patients. Endocrine. 2024;84(2):635-45.
Büttner M, Sykiotis GP, Al-Ibraheem A, Pinto M, Iakovou I, Osthus A, et al. Quality of life in thyroid cancer survivors with and without permanent hypoparathyroidism. Hormones – International Journal of Endocrinology and Metabolism. 2025;24(3):851-60.
Pilz M, Seyringer S, Singer S, Ioannidis G, Sykiotis G, Arraras J, et al. The cancer-specific health economic measure QLU-C10D is valid and responsive for assessing health utility in patients with thyroid cancer. Thyroid. 2024;34(11):1356-70.
Sykiotis G, Mageiropoulou A, Al-Ibraheem A, Pinto M, Iakovou I, Osthus A, et al. Prospective Predictors of Poor Emotional Functioning in Patients with Differentiated Thyroid Carcinoma. Thyroid. 2026;36(7):740-9.