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There is still an ongoing lack of awareness about thalassemia among Indonesians despite high disease prevalence, and this is associated with poor implementation of preventive and promotive measures. Thalassemia experts argue that education and raising awareness about thalassemia must be done from an early age in order to relieve the heavy disease burden of thalassemia, especially in Indonesia as it is geographically located in the thalassemia belt. In spite of this, there has been limited research on public perception towards thalassemia in Indonesia, particularly among young people.
In this study, the researcher will ask young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in an online survey. The survey consists of questions about the participants' demographic information as well as their knowledge, attitude, and practice (KAP) scores towards thalassemia. The study is expected to run from December 2020 to March 2021, with the online survey distributed in January 2021. Data collection will immediately follow, and it will be analyzed using univariate, bivariate, and multivariate analysis using the appropriate statistical tests. The findings gathered from this study will be vital in providing new insight into how the youth sees thalassemia in Indonesia. Such public health information will prove to be important in designing successful thalassemia intervention and education programs for Indonesian youth.
Research concept
In this study, the researcher will ask young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in an online survey. The survey consists of questions about the participants' demographic information as well as their knowledge, attitude, and practice (KAP) scores towards thalassemia. The study is expected to run from December 2020 to March 2021, with the online survey distributed in January 2021. Data collection will immediately follow, and it will be analysed using univariate, bivariate, and multivariate analysis using the appropriate statistical tests.
Study design
To evaluate the knowledge, attitude, and practice of Indonesian youth, the study design used will be observational, cross-sectional. An online questionnaire developed by the research team along with several experts is expected to be disseminated to the target population in January 2021. In light of the ongoing pandemic, this is expected to be a nationwide study where most of the work is done via online methods.
Place and period of study
This study will be conducted via online survey due to the ongoing pandemic situation. The study is expected to run from December 2020 to March 2021.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Youth | Young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in our online survey. |
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| Measure | Description | Time Frame |
|---|---|---|
| Indonesian youth's level of knowledge on thalassemia | To determine the relationships among Indonesian youth's demographic, education and socioeconomic level to their knowledge of thalassemia via a validated self-developed questionnaire. Knowledge will be assessed through question of common knowledges surrounding thalassemia, a final score (out of 100) will be used as representation of knowledge level (0-25: poor, 25-50 moderate, 51-75 good, and 76-100 very good) will be evaluated after participants answer all the questions. | Baseline, pre-intervention |
| Indonesian youth's attitude towards thalassemia | To determine the relationships among Indonesian youth's demographic, education and socioeconomic level to their attitude towards thalassemia via a validated self-developed questionnaire. (using a Likert scale of 1 to 4 - with 1 being "strongly agree" and 4 "strongly disagree") | Baseline, pre-intervention |
| Indonesian youth's practice towards thalassemia | To determine the relationships among Indonesian youth's demographic, education and socioeconomic level to their action and practice towards prevention of thalassemia via a validated self-developed questionnaire. (using a Likert scale of 1 to 4 - with 1 being "strongly agree" and 4 "strongly disagree") | Baseline, pre-intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Willingness to undergo thalassemia screening | To determine Indonesian youth's willingness (using a Likert scale of 1 to 4 - with 1 being "strongly agree" and 4 "strongly disagree") to undergo thalassemia screening independently | Baseline, pre-intervention |
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Inclusion Criteria:
Exclusion Criteria:
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In this study, we will ask young people in Indonesia between the age of 15-24 who are currently attending high school or university-level education to fill in our online survey.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Edward C Yo | Contact | +628973420875 | edwardchristopheryo@gmail.com | |
| Mikhael Yosia, Dr. | Contact | +6281378778784 | mikhael.yosia@gmail.com |
| Name | Affiliation | Role |
|---|---|---|
| Pustika A Wahidiyat, Professor. | Fakultas Kedokteran Universitas Indonesia | Principal Investigator |
| Mikhael Yosia, Dr. | Fakultas Kedokteran Universitas Indonesia | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Fakultas Kedokteran Universitas Indonesia - Rumah Sakit Cipto Mangunkusumo | Jakarta Pusat | DKI Jakarta | 10430 | Indonesia |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 17256039 | Background | Marengo-Rowe AJ. The thalassemias and related disorders. Proc (Bayl Univ Med Cent). 2007 Jan;20(1):27-31. doi: 10.1080/08998280.2007.11928230. | |
| Background | Husna N, Sanka I, Arif AA, Putri C, Leonard E, Handayani NSN. Prevalence and distribution of thalassemia trait screening. J Med Sci. 2017 Jul;49(3):106-13. | ||
| Background | Wahidiyat PA, Sari TT, Rahmartani LD, Setianingsih I, Iskandar SD, Pratanata AM, et al. An insight into Indonesian current thalassaemia care and challenges. ISBT Sci Ser. 2020;15(3):334-41. | ||
| Background | Wahidiyat I, Wahidiyat PA. Genetic problems at present and their challenges in the future: thalassemia as a model. Paediatr Indones. 2006;46(5):189-94. |
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We are not planning on making the IPD available for other researchers due to the current format of our informed consent.
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| ID | Term |
|---|---|
| D013789 | Thalassemia |
| ID | Term |
|---|---|
| D000745 | Anemia, Hemolytic, Congenital |
| D000743 | Anemia, Hemolytic |
| D000740 | Anemia |
| D006402 | Hematologic Diseases |
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| Edward C Yo |
| Fakultas Kedokteran Universitas Indonesia |
| Study Director |
| Muhammad M Wildani | Fakultas Kedokteran Universitas Indonesia | Study Chair |
| Visabella R Triatmono | Fakultas Kedokteran Universitas Indonesia | Study Chair |
| D006425 |
| Hemic and Lymphatic Diseases |
| D006453 | Hemoglobinopathies |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |