Study protocol for a cross-sectional study on knowledge, attitude, and practice towards thalassemia among Indonesian youth

Abstract

ABSTRACTIntroductionThalassemia is an inherited hemoglobinopathy with high prevalence and incidence in Indonesia. It leads to health, psychosocial, and economic burdens that affect patients, caregivers, and the country. As treatments for thalassemia in Indonesia remain expensive, not readily available, or associated with poor compliance, thalassemia prevention through screening programs is highly recommended to reduce the number of new cases. It is best to target thalassemia prevention and education to youth, but baseline data regarding their knowledge, attitude, and practice must first be assessed to measure their current awareness level as well as behavioral patterns regarding thalassemia. Currently, there has been limited research on public perception towards thalassemia in Indonesia.Methods and analysisThis observational, cross-sectional study will recruit at least 500 participants between the age of 15 - 24 across all provinces in Indonesia. This is the first nationwide thalassemia study that explores knowledge, attitude, and practice among Indonesian youth (15 - 24 years old) – including thalassemia major patients, carriers, unaffected individuals, and individuals with unknown carrier status. A questionnaire will be disseminated online through social media. The questionnaire will consist of 28 questions to assess knowledge, attitude, and practice from the general population and 38 questions to assess knowledge, attitude, and practice specifically from thalassemia major patients. Questions about whether thalassemia is perceived as a curse, role of consanguinity on the mode of inheritance, and willingness to undergo screening are incorporated to specifically suit Indonesian sociocultural settings.Ethics and disseminationThis study has been approved by the Ethical Committee of Faculty of Medicine, Universitas Indonesia, and Cipto Mangunkusumo Hospital. Informed consent will be obtained from all participants before completing the online questionnaire. Results will be published in a relevant journal and scientific meetings as well as shared with local stakeholders and policymakers.Study registrationThis study has been registered at ClinicalTrials.gov (NCT04706585).ARTICLE SUMMARYStrengths and limitations of this studyFirst nationwide knowledge, attitude, and practice study on Indonesian youth that provides baseline data for thalassemia major patients, carriers, unaffected individuals, and individuals with unknown carrier status.Incorporation of knowledge, attitude, and practice questions that are specific to Indonesian cultural settings, which include perception of thalassemia as a curse and impact of consanguinity on inheritance of thalassemia.Online dissemination of the survey via social media allows us to reach a large number of Indonesian youth from all backgrounds who are located in all 34 provinces of IndonesiaThe use of online self-administered questionnaire for data collection may discourage those with poor Internet connection, particularly in remote areas, from participating.Lack of background data on public perception towards thalassemia in Indonesia means that some assumptions from expert opinions and educated guesses have to be made when developing the questionnaire.