Development of Thalassemia Medication Questionnaire (TMQ): An Instrument for Measuring Major Thalassemia Patients’ Knowledge and Practice Regarding their Medications

Abstract

Background: Thalassemia is a congenital disease and Iran is as one of the countries in the thalassemia belt. It has a huge burden in Iranian national health budget. The aim of this study was to develop a questionnaire to assess the knowledge and practice of thalassemia patients toward their medications. Methods: This is a methodological research, which was done from April 2020 to November 2021 in Tehran, Iran, to develop a valid and reliable instrument for measuring major thalassemia patients’ knowledge and practice regarding their medications, a questionnaire based on three iron chelating medications (deferoxamine, deferiprone, and deferasirox) developed. This process done by holding several expert panel meetings. This questionnaire was consisting of some aspects such as: administration, self-monitoring, miss dose, common interactions, and adverse events. Content validity index (CVI) and internal consistency and reliability were calculated. Results: The CVI was as 0.76 for deferoxamine, 0.80 deferiprone and 0.88 for deferasirox questionnaire. Further analysis for internal consistency demonstrated satisfactory results with Cronbach’s alpha coefficients ranging from 0.743 to 0.781. Results showed Thalassemia Medication Questionnaire (TMQ) demonstrated acceptable validity and reliability for application. Conclusion: It was concluded that TMQ could be a useful instrument to measure knowledge and practice about iron chelation therapy. The reason is the diverse range of questions and the simplicity, validity, reliability, and the practicability.

Keywords

• Iron Chelating Agents; Deferasirox; Deferoxamine; Deferiprone; Thalassemia; Questionnaire