The Effectiveness of Application (Adolescent Thalassemia Self) on the Quality of Life of Children with Thalassemia
DOI:
https://doi.org/10.53770/medica.v8i2.863Keywords:
Thalassemia, Quality of Life, Adolescents, Self-Care, Mobile ApplicationAbstract
Thalassemia is a chronic hereditary blood disorder that requires lifelong blood transfusions and iron chelation therapy, significantly affecting the physical, emotional, social, and academic functioning of adolescents. These challenges highlight the need for innovative, technology-based interventions to support sustainable self-care. This study aimed to determine the effectiveness of the SETARA (Self-Care Thalassemia Adolescents) application in improving the quality of life among adolescents with thalassemia compared to standard education. A quasi-experimental pre–post design with a control group was conducted involving 34 adolescents aged 12–18 years with transfusion-dependent thalassemia. Participants were equally divided into intervention and control groups (n = 17 each). The intervention group used the SETARA application for 4–8 weeks, while the control group received standard education. Quality of life was measured using the PedsQL Thalassemia Module and analyzed using a paired samples t-test. The results showed a statistically significant improvement in the quality of life in the intervention group (p < 0.001), indicating the effectiveness of the SETARA application. In contrast, the control group did not show a significant change (p = 0.205). In conclusion, the SETARA application is effective in improving the quality of life of adolescents with thalassemia and has the potential to complement standard education and clinical care. It is recommended that adolescents use the application regularly, and healthcare professionals integrate it into patient education and family support programs.
References
Ahmed Mohamedain, O. M., Malik, M. M., Elnaseeh, W. M., Hasan, A., Taha, S. O., Taha, H. O., ... & Qureshi, H. A. (2025). Co-inherited α-Thalassemia and β-Globin Haplotypes as Determinants of Vaso-Occlusive Crisis, Stroke, and Mortality in Sickle Cell Disease: A Systematic Review. Vascular and Endovascular Review, 8(13s), 33-42. Retrieved from https://verjournal.com/index.php/ver/article/view/983
Andriani, R. (2025). Model “SETARA” Tingkatkan Manajemen Diri Remaja Penyintas Talasemia: Riset Doktor FIK UI Bawa Harapan Baru bagi Generasi Muda [Internet]. Fakultas Ilmu Keperawatan, Universitas Indonesia. Retrieved from https://nursing.ui.ac.id/model-setara-tingkatkan-manajemen-diri-remaja-penyintas-talasemia-riset-doktor-fik-ui-bawa-harapan-baru
Andriani, R., Nurhaeni, N., A., & Safariyah, E. (2022). Andriani, R., Nurhaeni, N., & Safariyah, E. (2022). Mother's fortitude in taking care of children with thalassemia in Indonesia. KnE Life Sciences, 7(2), 574-584. https://doi.org/10.18502/kls.v7i2.10358
Ayu, A., & Mulyono, S. (2023). A Mobile App Deployment for Quality-of-Life Patient with Thalassemia: A narrative review. Jurnal Berita Ilmu Keperawatan, 16(1), 116-124. https://doi.org/10.23917/bik.v16i1.1371
BGI Genomics. (2023). State of thalassemia awareness 2023 report [Internet]. News-Medical. Retrieved from https://www.news-medical.net/whitepaper/20231206/State-of-Thalassemia-Awareness-2023-Report.aspx
Borhani, F., Najafi, M. K., Rabori, E. D., & Sabzevari, S. (2011). The effect of family-centered empowerment model on quality of life of school-aged children with thalassemia major. Iranian journal of nursing and midwifery research, 16(4), 292–298. Retrieved from https://pmc.ncbi.nlm.nih.gov/articles/PMC3583099/
CNN Indonesia. (2025). Kasus Talasemia Terus Meningkat di RI, Jawa Barat Tertinggi [Internet]. CNN Indonesia. Retrieved from. https://www.cnnindonesia.com/gaya-hidup/20250521131109-255-1231547/kasus-talasemia-terus-meningkat-di-ri-jawa-barat-tertinggi
El-Khalifa, B. M., Soliman, W. A., Mazy, H. M., Ahmed, M. G., Al-Trad, H., Elmeneizee, T. H., ... & Morsi, M. H. (2025). Crispr/Cas9 gene editing in transfusion-dependent β-thalassemia and sickle cell disease: a systematic review of non-randomized clinical trials. Egyptian Journal of Medical Human Genetics, 26(1), 177. https://doi.org/10.1186/s43042-025-00806-4
Fauziyah, A. S. (2025). Self-Care Pada Anak Dengan Thalassemia Mayor Usia Adolescent. S1 thesis. Universitas Pendidikan Indonesia. Retrieved from http://repository.upi.edu/141066/
Indriani, V., Triyono, T., & Mulyono, B. (2025). Using Blood Group Genotyping to Predict Hemolysis in Patients With β-Thalassemia Major With Frequent Transfusions: Protocol for a Cross-Sectional Study. JMIR Research Protocols, 14(1), e64379. Retrieved from https://www.researchprotocols.org/2025/1/e64379
Janatri, S., Kuan, C. S., & Harun, Z. (2024). Mobile and Web-Based Apps to Support Self-Care in Adolescents with Thalassemia: A Systematic Review. International Journal of Biotechnology and Biomedicine (IJBB), 1(2), 10-23. https://doi.org/10.31674/ijbb.2024.v01i02.002
Khademian, Z., Kazemi Ara, F., & Gholamzadeh, S. (2020). The Effect of Self Care Education Based on Orem's Nursing Theory on Quality of Life and Self-Efficacy in Patients with Hypertension: A Quasi-Experimental Study. International journal of community based nursing and midwifery, 8(2), 140–149. https://doi.org/10.30476/IJCBNM.2020.81690.0
Kharaman-Nia, F., Rezaei, H., Roustaei, N., Etemadfar, P., & Hosseini, N. (2023). Comparing the effects of self- care education by lecture and smartphone application on self-efficacy of patients with thalassemia. BMC medical informatics and decision making, 23(1), 21. https://doi.org/10.1186/s12911-023-02097-4
Khazaei, F., Razaghi, N., & Vashani, H. B. (2021). Effectiveness of a Support-Training Program based on the Orem’s Self-Care Deficit Theory on the Quality of Life of Children Undergoing Hemodialysis. Journal of Evidence-based Care, 11(1), 7.
Mardhiyah, A., Panduragan, S. L., Mediani, H. S., & Yosep, I. (2024). Factors Associated With Quality of Life Among Adolescent With Beta Thalassemia in Indonesia: A Cross-Sectional Study. SAGE open nursing, 10, 23779608241255638. https://doi.org/10.1177/23779608241255638
Mohamedain, A. (2025). Pregnancy and Perinatal Outcomes among Women with Sickle Cell Disease in Saudi Arabia: A Systematic Review. Vascular and Endovascular Review, 8(8s), 1-8. https://verjournal.com/index.php/ver/article/view/634
Rahman, I. U., Khan, M. T. M., Ali, Z., Ahmad, S., Shahid, M., Zafar, S., ... & Siraj, S. (2025). Thalidomide confers therapeutic benefit in beta thalassemia patients by enhancing hemoglobin and hematopoietic gene expression: A non-randomized clinical trial. Blood Cells, Molecules, and Diseases, 113, 102936. https://doi.org/10.1016/j.bcmd.2025.102936
Soteriades, E. S., Angastiniotis, M., Economidou, E. C., Farmakis, D., Avraam, D., & Eleftheriou, A. (2025). The disease burden of β-thalassaemia revisited. Hematology, 30(1), 2551450. https://doi.org/10.1080/16078454.2025.2551450
Tuo, Y., Li, Y., Li, Y., Ma, J., Yang, X., Wu, S., Jin, J., & He, Z. (2024). Global, regional, and national burden of thalassemia, 1990-2021: a systematic analysis for the global burden of disease study 2021. EClinicalMedicine, 72, 102619. https://doi.org/10.1016/j.eclinm.2024.102619
Unissa, R., Monica, B., Konakanchi, S., Darak, R., Keerthana, S. L., & Kumar, S. A. (2018). Thalassemia: a review. Asian Journal of Pharmaceutical Research, 8(3), 195-202. Retrieved from https://indianjournals.com/article/ajpr-8-3-014
Urtekin, D., & Eroglu, S. A. (2024). Effect of training based on Orem's self-care deficit theory on breast cancer patients' management of chemotherapy-related side effects and self-care behaviors: A randomized controlled trial. European Journal of Oncology Nursing, 73, 102698. https://doi.org/10.1016/j.ejon.2024.102698
Xie, Y., Wang, D., Zhou, J., Zhou, T., Huang, Y., Zhang, K., & Li, H. (2025). Impact of nursing based on Orem's self‐care theory on self‐care behaviours in older patients with heart failure: A randomised controlled trial. Australasian Journal on Ageing, 44(3), e70059. https://doi.org/10.1111/ajag.70059
Yayasan Talasemia Indonesia – POPTI. (2011). Jawa Barat menempati peringkat pertama dalam jumlah pasien talasemia. Rumah Sakit Dr. Hasan Sadikin Bandung [Internet]. Yayasan Talasemia Indonesia – POPTI. Retrieved from https://web.rshs.go.id/jawa-barat-ranking-1-penderita-thalassemia
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