Introduction
Thalassemia 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 analysis
This observational, cross-sectional study will recruit at least 500 participants between the age of 15 to 24 across all provinces in Indonesia. This is the first nationwide thalassemia study that explores knowledge, attitude, and practice among Indonesian youth (15 to 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 dissemination
This 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 registration
This study has been prospectively registered at ClinicalTrials.gov (13 January 2021; NCT04706585; https://clinicaltrials.gov/ct2/show/NCT04706585).