Clinical trial NCT04706585: Thalassemia Knowledge in Young People of Indonesia
Official title: Thalassemia in Indonesia: Current Knowledge, Attitude, and Practice Among Young People
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Thalassemia
Keywords: Thalassemia
Indonesia
Youth
Lead sponsor: Fakultas Kedokteran Universitas Indonesia
Sponsor class: OTHER
First posted: 2021-01-13
Enrollment: 1010
Sex: ALL
Minimum age (years): 15
Maximum age (years): 24
Standard ages: CHILD
ADULT
Accepts healthy volunteers: yes
Observational model: ECOLOGIC_OR_COMMUNITY
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: 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.

Brief summary: 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.

Detailed description: 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.

Eligibility criteria: Inclusion Criteria:

* Survey participants are based in Indonesia
* Survey participants are between the age of 15-24 and currently attending high school or university level education
* Survey participants include both thalassemia-affected patients and non-patients
* Survey participants have understood and given their consent for the research

Exclusion Criteria:

* Currently not studying/living in Indonesia
* Below the age of 15 or above 24
* No consent is given

Primary outcomes:
measure: Indonesian youth's level of knowledge on thalassemia
timeFrame: Baseline, pre-intervention
measure: Indonesian youth's attitude towards thalassemia
timeFrame: Baseline, pre-intervention
measure: Indonesian youth's practice towards thalassemia
timeFrame: Baseline, pre-intervention
Secondary outcomes:
measure: Willingness to undergo thalassemia screening
timeFrame: Baseline, pre-intervention
Other outcomes:
Locations:
city: Jakarta Pusat
country: Indonesia
facility: Fakultas Kedokteran Universitas Indonesia - Rumah Sakit Cipto Mangunkusumo
state: DKI Jakarta
Study officials:
affiliation: Fakultas Kedokteran Universitas Indonesia
name: Pustika A Wahidiyat, Professor.
role: PRINCIPAL_INVESTIGATOR
affiliation: Fakultas Kedokteran Universitas Indonesia
name: Mikhael Yosia, Dr.
role: PRINCIPAL_INVESTIGATOR
affiliation: Fakultas Kedokteran Universitas Indonesia
name: Edward C Yo
role: STUDY_DIRECTOR
affiliation: Fakultas Kedokteran Universitas Indonesia
name: Muhammad M Wildani
role: STUDY_CHAIR
affiliation: Fakultas Kedokteran Universitas Indonesia
name: Visabella R Triatmono
role: STUDY_CHAIR
References:
citation: 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.
citation: 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.
citation: 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.
citation: 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.