PURPOSE: The aim of this systematic review is to provide 1) an understanding of the components of quality of life (QOL) questionnaires and 2) an up-to-date insight of the types of QOL questionnaires available, strengths and limitations based on current literature.
METHODS: A literature search was conducted from 18 to 21 of February 2019 using 6 major databases: Cochrane Library, Ovid Medline, PubMed, Scopus, Taylor and Francis, and Web of Science. All papers were skimmed by title and abstract to determine whether the paper fulfilled the screening criteria. In cases of uncertainty, the paper was read in totality to justify its inclusion. After that, duplicates were eliminated and the remainder was subjected to a second set of inclusion and exclusion criteria before finalizing the list of included studies.
RESULTS: An initial search returned with 402 studies, which were subsequently filtered using prespecified criteria to 27 studies to collate information regarding questionnaires assessing QOL of thyroid eye disease patients.
CONCLUSIONS: The QOL of thyroid eye disease patients is best assessed using disease-specific questionnaires. Among the different types of questionnaires, the Graves Ophthalmopathy Quality of Life (GO-QOL) questionnaire is preferred due to its' ability to explore QOL in-depth and proven efficacy in many countries after cultural adaptation at the expense of time. Single-item questionnaires like the Thyroid Eye Disease Quality of Life (TED-QOL) are more suitable as screening tools in busy metropolitan settings while semi-structured interviews are important in developing new ways of assessing the QOL of thyroid eye disease patients.
* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.