Thalassemia Knowledge in Young People of Indonesia

NCT04706585 | Unknown

• 1 other identifier: MHS001
• Study Type: observational
• Target: 1,010
• Locations: 1 country
• Sites: 1

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.

Conditions

Thalassemia

Keywords

Thalassemia; Indonesia; Youth

Outcome Measures

Primary Outcomes (3)

• 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

Secondary Outcomes (1)

• Willingness to undergo thalassemia screening

  Baseline, pre-intervention

Study Arms (1)

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.

Eligibility Criteria

• Age: 15 Years - 24 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64)
• 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.

You may qualify if:

• 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

You may not qualify if:

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

Sponsors & Collaborators

• Fakultas Kedokteran Universitas Indonesia: lead

Study Sites (1)

Fakultas Kedokteran Universitas Indonesia - Rumah Sakit Cipto Mangunkusumo

Jakarta Pusat, DKI Jakarta, 10430, Indonesia

Location

Related Publications (4)

• 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.

  PMID: 17256039 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.

  BACKGROUND

MeSH Terms

Conditions

Thalassemia

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

• Pustika A Wahidiyat, Professor.

  Fakultas Kedokteran Universitas Indonesia

  PRINCIPAL INVESTIGATOR

• Mikhael Yosia, Dr.

  Fakultas Kedokteran Universitas Indonesia

  PRINCIPAL INVESTIGATOR

• 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

Central Study Contacts

Edward C Yo

CONTACT

+628973420875; edwardchristopheryo@gmail.com

Mikhael Yosia, Dr.

CONTACT

+6281378778784; mikhael.yosia@gmail.com

Study Design

• Study Type: observational
• Observational Model: ECOLOGIC OR COMMUNITY
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 8, 2020
• First Posted: January 13, 2021
• Study Start: June 1, 2021
• Primary Completion: July 1, 2021
• Study Completion: October 10, 2021
• Last Updated: May 11, 2021

Record last verified: 2021-05

Data Sharing

• IPD Sharing: Will not share

Locations

ID (1)