Thyroid disease-specific quality of life questionnaires - A systematic review

Thyroid diseases are very common and rarely life-threatening. One of the main therapeutic goals is an improvement in quality of life, making it important to measure in clinical and research settings. The aim of this systematic review is to provide an overview of the currently available thyroid-specific quality of life questionnaires with regard to their validation quality in order to make recommendations for clinical use with a special focus on German questionnaires.

A systematic literature search was performed in Pubmed, Google Scholar and the Cochrane Library. A total of 904 studies were identified. After excluding duplicates, non-English- or German-language texts, full texts that were not freely available and studies with irrelevant content, 64 studies reporting on 16 different questionnaires were included in the analysis.

Four questionnaires concerned benign thyroid diseases (ThyPRO, ThyPRO-39, Thy-R-HRQoL and Thy-D-QOL), six malignant thyroid diseases (THYCA-QoL, ThyCa-HRLQOL, EORTC-Thy34, MADSI-Thy, QOL-Thyroid and ThyCAT), and six endocrine orbitopathy (GO-QOL, GO-QLS, TED-QOL, STED-QOL, TAO-QoL and Ox-TED). Only five questionnaires were at least developed, if not validated, in German, and five were developed in more than two languages.

ThyPRO and the ThyPRO-39 are the best-evaluated questionnaires for benign thyroid diseases. Alternatively, in hypothyroid patients, the adequately validated Thy-D-QoL can be used. For malignant thyroid diseases, the choice should be made individually, as all six questionnaires (THYCA-QoL, ThyCA-HRQOL, EORTC-Thy34, MDASI-Thy, QOL-Thyroid and ThyCAT) have different strengths and weaknesses. The GO-QOL is the best-validated questionnaire in endocrine orbitopathy. However, the TED-QOL is also suitable as a short-screening questionnaire for these patients.