Thalassaemia is one of the most prevalent inherited blood disorders in Indonesia, with highly diverse mutations ranging from mild to severe that can be found across the nation. Nevertheless, thalassaemia management in Indonesia is still limited to supportive treatment, such as blood transfusion, iron chelation, complications monitoring, psychosocial support and a comfortable transition from child to adult clinic. However, these managements are still suboptimal in most parts of the nation. Indonesia still has a long way from implementing the optimal curative treatment for thalassaemia. Iron chelators are sometimes not available, especially in rural areas. The cost for optimal dosages of iron chelation also cannot be fully covered by the current national health insurance scheme. However, it still benefits our patients, considering it is the only treatment to decrease iron deposition in organs. With that situation, our patients, both paediatric and adults, have normal cardiac haemosiderosis, moderate-to-severe hepatic haemosiderosis and normal to mild pancreatic haemosiderosis. Therefore, the number of deaths, especially those due to heart failure and infection, was significantly reduced. An improvement in thalassaemia supportive treatments is in line with the increase in patients' life expectancy. Without curative treatment options, the lifelong cost for treatment will extremely burden the national health budget. To date, thalassaemia stands for the 5th most costly disease in Indonesia. Therefore, a screening programme must be realized soon; hence, the treatment cost can be allocated for initiating the transplant unit or improving other important areas.

IntroductionThalassaemia is an inherited blood disorder, for which definitive treatments remain largely inaccessible. The recommended approach to reduce the disease burden is by prevention through screening. Currently, the implementation of thalassaemia preventive measures is poorly regulated in Indonesia. Thalassaemia prevention and education are best targeted to the youth, but information on their awareness towards thalassaemia is limited. This study aims to investigate the knowledge, attitude and practice (KAP) towards thalassaemia among Indonesian youth.MethodsThis observational study took place between January and May 2021. An online questionnaire was disseminated to Indonesian youth aged 15–24. Eligible respondents included carriers, unaffected individuals and individuals with unknown carrier status. The questionnaire comprised 28 questions to assess KAP. A cut-off of 75% was used to categorise participant’s KAP into poor or negative and good or positive. Descriptive statistics, χ2 test, logistic regression and Pearson correlation were performed for data analysis.ResultsA total of 906 responses were gathered, and 878 were analysed. Most respondents had poor knowledge (62.1%), positive attitude (83.3%) and poor practice (54.4%) towards thalassaemia. The results implied that respondents had limited understanding regarding the types of thalassaemia and the difference between asymptomatic carriers and individuals without the thalassaemia trait. Many (82.6%) believed they were not carrying thalassaemia trait despite the fact that most (95.7%) never got tested. Age, education, gender, residence and family income were key factors that correlated with or predicted the youth’s KAP towards thalassaemia. Older respondents and women were more likely to have good KAP.ConclusionThalassaemia screening targeted to the youth is urgently needed, and future interventions must consider sociodemographic factors that may affect how they perceive the disease. Social media appeals to the youth as an important source of information, but school, parents and health professionals should also be involved in delivering education about thalassaemia.

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IntroductionIn rural and difficult-to-access settings, early and accurate recognition of febrile children at risk of progressing to serious illness could contribute to improved patient outcomes and better resource allocation. This study aims to develop a prognostic clinical prediction tool to assist community healthcare providers identify febrile children who might benefit from referral or admission for facility-based medical care.Methods and analysisThis prospective observational study will recruit at least 4900 paediatric inpatients and outpatients under the age of 5 years presenting with an acute febrile illness to seven hospitals in six countries across Asia. A venous blood sample and nasopharyngeal swab is collected from each participant and detailed clinical data recorded at presentation, and each day for the first 48 hours of admission for inpatients. Multianalyte assays are performed at reference laboratories to measure a panel of host biomarkers, as well as targeted aetiological investigations for common bacterial and viral pathogens. Clinical outcome is ascertained on day 2 and day 28.Presenting syndromes, clinical outcomes and aetiology of acute febrile illness will be described and compared across sites. Following the latest guidance in prediction model building, a prognostic clinical prediction model, combining simple clinical features and measurements of host biomarkers, will be derived and geographically externally validated. The performance of the model will be evaluated in specific presenting clinical syndromes and fever aetiologies.Ethics and disseminationThe study has received approval from all relevant international, national and institutional ethics committees. Written informed consent is provided by the caretaker of all participants. Results will be shared with local and national stakeholders, and disseminated via peer-reviewed open-access journals and scientific meetings.Trial registration numberNCT04285021.