Wahidiyat Pustika Amalia, Yo Edward Christopher, Wildani Muhammad Maulana, Triatmono Visabella Rizky, Yosia Mikhael
Department of Child Health, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia
Department of Hematology and Oncology, Rumah Sakit Umum Pusat Nasional Dr Cipto Mangunkusumo, Central Jakarta, Indonesia.
BMJ Open. 2021 Dec 3;11(12):e054736. doi: 10.1136/bmjopen-2021-054736.
Thalassaemia 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.
This 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, χ test, logistic regression and Pearson correlation were performed for data analysis.
A 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.
Thalassaemia 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.
地中海贫血是一种遗传性血液疾病,目前仍基本无法获得确切的治疗方法。减轻疾病负担的推荐方法是通过筛查进行预防。目前,印度尼西亚地中海贫血预防措施的实施监管不力。地中海贫血的预防和教育最好以青年人为目标对象,但关于他们对地中海贫血的认知情况的信息有限。本研究旨在调查印度尼西亚青年对地中海贫血的知识、态度和实践(KAP)情况。
这项观察性研究于2021年1月至5月进行。向15至24岁的印度尼西亚青年发放了一份在线问卷。符合条件的受访者包括携带者、未受影响个体以及携带者状态未知的个体。该问卷包含28个问题以评估KAP。采用75%的临界值将参与者的KAP分为差或负面以及好或正面。进行描述性统计、χ检验、逻辑回归和Pearson相关性分析以进行数据分析。
共收集到906份回复,其中878份进行了分析。大多数受访者对地中海贫血的知识掌握较差(62.1%),态度积极(83.3%),实践情况较差(54.4%)。结果表明,受访者对地中海贫血的类型以及无症状携带者与非地中海贫血特质个体之间的差异了解有限。许多人(82.6%)认为自己没有携带地中海贫血特质,尽管大多数人(95.7%)从未进行过检测。年龄、教育程度、性别、居住地和家庭收入是与青年对地中海贫血的KAP相关或可预测其KAP的关键因素。年龄较大的受访者和女性更有可能具有良好的KAP。
迫切需要针对青年进行地中海贫血筛查。未来的干预措施必须考虑可能影响他们对该疾病认知的社会人口统计学因素。社交媒体对青年来说是重要的信息来源,但学校、家长和卫生专业人员也应参与开展关于地中海贫血的教育。