Vol. 24 No. 1b (2024): Special Issue
Open Access
Peer Reviewed

Factors Affecting the Quality of Life of Children with Thalassemia: Literature Review

Authors

Aisya Nur Abida

DOI:

10.29303/jbt.v24i1b.8143

Published:

2024-12-25

Downloads

Abstract

The chronic condition known as thalassaemia is a hereditary ailment that results in the loss or decreased synthesis of one or more globin chains in erythrocytes. Ineffective erythropoiesis, early erythrocyte breakdown, and anaemia are all possible outcomes of thalassaemia. In Indonesia, it is estimated that between 3-10% of people have β thalassaemia, whereas between 2.6-11% have α thalassaemia. Approximately 2,500 newborns are thought to be born with β-thalassemia major each year. The purpose of this study is to identify the variables that affect the quality of life for kids with thalassaemia so that the right kind of medication can be developed to lessen this issue. This study used the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) technique to conduct a literature review. The PubMed and ScienceDirect databases were used to conduct online searches for the literature. Three articles in all were chosen for examination based on search results that satisfied the inclusion requirements. The study findings from the three analysed publications indicate that the primary factor influencing a child's declining quality of life is school function. Children's age, the kind of iron chelation treatment, the frequency of transfusions, the number of family members with thalassaemia, and haematopoietic stem cell transplant operations are all factors that affect the quality of life of patients with thalassaemia. Based on the factors that influence the quality of life of children with thalassemia, the role of parents supported by the government and community is needed in the treatment of children with thalassemia.

Keywords:

Children, thalassemia, risk factors, quality of life.

References

Ali, S., Mumtaz, S., Shakir, H. A., Khan, M., Tahir, H. M., Mumtaz, S., Mughal, T. A., Hassan, A., Kazmi, S. A. R., Sadia, Irfan, M., & Khan, M. A. (2021). Current status of beta-thalassemia and its treatment strategies. Molecular Genetics and Genomic Medicine, 9(12), 1–14. https://doi.org/10.1002/mgg3.1788

Behdani, F., Badiee, Z., Hebrani, P., Moharreri, F., Badiee, A. H., Hajivosugh, N., Rostami, Z., & Akhavanrezayat, A. (2015). Psychological aspects in children and adolescents with major thalassemia: A case-control study. Iranian Journal of Pediatrics, 25(3), 0–7. https://doi.org/10.5812/ijp.25(3)2015.322

Biswas, B., Naskar, N. N., Basu, K., Dasgupta, A., Basu, R., & Paul, B. (2023). An Epidemiological Study of the Quality of Life of Children With Beta-Thalassemia Major (β-TM) and Its Correlates in Kolkata, West Bengal, India. Cureus, 15(3). https://doi.org/10.7759/cureus.36888

Farmakis, D., Porter, J., Taher, A., Cappellini, M. D., Angastiniotis, M., & Eleftheriou, A. (2022). 2021 Thalassaemia International Federation Guidelines for the Management of Transfusion Dependent Thalassemia. Hemasphere, 6(8). https://doi.org/10.1097/HS9.0000000000000732

Geneen, L. J., Dorée, C., & Estcourt, L. J. (2023). Interventions for improving adherence to iron chelation therapy in people with sickle cell disease or thalassaemia. Cochrane Database of Systematic Reviews, 2023(3). https://doi.org/10.1002/14651858.CD012349.pub3

Hossain, M. J., Islam, M. W., Munni, U. R., Gulshan, R., Mukta, S. A., Miah, M. S., Sultana, S., Karmakar, M., Ferdous, J., & Islam, M. A. (2023). Health-related quality of life among thalassemia patients in Bangladesh using the SF-36 questionnaire. Scientific Reports, 13(1), 1–12. https://doi.org/10.1038/s41598-023-34205-9

Lin, J., Sklar, G. E., Oh, V. M. Sen, & Li, S. C. (2008). Factors affecting therapeutic compliance: A review from the patient’s perspective. Therapeutics and Clinical Risk Management, 4(1), 269–286. https://doi.org/10.2147/tcrm.s1458

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. https://doi.org/10.1177/23779608241255638

Mulas, O., Efficace, F., Orofino, M. G., Piroddi, A., Piras, E., Vacca, A., Barella, S., Costa, A., Giesinger, J. M., La Nasa, G., & Caocci, G. (2023). Health-Related Quality-of-Life Profile of Pediatric Patients with β Thalassemia after Hematopoietic Stem Cell Transplantation. Journal of Clinical Medicine, 12(18), 1–13. https://doi.org/10.3390/jcm12186047

Piga, A. (2017). Impact of bone disease and pain in thalassemia. Hematology, 2017(1), 272–277. https://doi.org/10.1182/asheducation-2017.1.272

Pinto, V. M., & Forni, G. L. (2020). Management of iron overload in beta-thalassemia patients: Clinical practice update based on case series. International Journal of Molecular Sciences, 21(22), 1–20. https://doi.org/10.3390/ijms21228771

Qiao, J., Luo, B., Ming, J., Zhang, X., Weng, J., Deng, Q., Zhou, S., & Chen, Y. (2024). Health-related quality of life and associated factors among children with Transfusion-dependent β-thalassaemia: a cross-sectional study in Guangxi Province. Health and Quality of Life Outcomes, 22(1), 93. https://doi.org/10.1186/s12955-024-02307-1

Sari, T. T., Rahmartani, L. D., Wirahmadi, A., Selene, N. B., Iskandar, S. D., & Wahidiyat, P. A. (2024). Psychological Burden among Pediatric Thalassemia Major Patients in Indonesia: A Review. Thalassemia Reports, 14(2), 33–43. https://doi.org/10.3390/thalassrep14020005

Shafie, A. A., Chhabra, I. K., Wong, J. H. Y., Mohammed, N. S., Ibrahim, H. M., & Alias, H. (2020). Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia. Health and Quality of Life Outcomes, 18(1). https://doi.org/10.1186/s12955-020-01381-5

Taher, A. T., Radwan, A., & Viprakasit, V. (2015). When to consider transfusion therapy for patients with non-transfusion-dependent thalassaemia. Vox Sanguinis, 108(1), 1–10. https://doi.org/10.1111/vox.12201

Vahedi, S. (2010). World Health Organization Quality-of-Life Scale (WHOQOL-BREF): Analyses of Their Item Response Theory Properties Based on the Graded Responses Model. Iranian Journal of Psychiatry, 5(4), 140–153. http://www.ncbi.nlm.nih.gov/pubmed/22952508%0Ahttp://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC3395923

Wahidiyat, P. A., Sari, T. T., Rahmartani, L. D., Iskandar, S. D., Pratanata, A. M., Yapiy, I., Setianingsih, I., Atmakusuma, T. D., & Lubis, A. M. (2022). Thalassemia in Indonesia. Hemoglobin, 46(1), 39–44. https://doi.org/10.1080/03630269.2021.2023565

Wratsangka, R., Tungka, E. X., Murthi, A. K., Ali, S., Nainggolan, I. M., & Sahiratmadja, E. (2024). Anemia among Medical Students from Jakarta: Indonesia - Iron Deficiency or Carrier Thalassemia? Anemia, 2024. https://doi.org/10.1155/2024/4215439

Yousuf, R., Akter, S., Wasek, S. M., Sinha, S., Ahmad, R., & Haque, M. (2022). Thalassemia: A Review of the Challenges to the Families and Caregivers. Cureus, 14(12), 8–15. https://doi.org/10.7759/cureus.32491

Yusof, W., Zulkifli, M. M., Azman, N. F., Ab Hamid, S. A., Othman, A., Draman, N., Zilfalil, B. A., Hassan, R., & Abdullah, W. Z. (2020a). Factors affecting health-related quality of life and its association with the Xmn1-Gγ polymorphism among adolescents with transfusion-dependent beta thalassemia and HbE/β-thalassemia in East Coast Malaysia. Pediatric Hematology Oncology Journal, 5(2), 30–36. https://doi.org/10.1016/j.phoj.2020.04.001

Yusof, W., Zulkifli, M. M., Azman, N. F., Ab Hamid, S. A., Othman, A., Draman, N., Zilfalil, B. A., Hassan, R., & Abdullah, W. Z. (2020b). Factors affecting health-related quality of life and its association with the Xmn1-Gγ polymorphism among adolescents with transfusion-dependent beta thalassemia and HbE/β-thalassemia in East Coast Malaysia. Pediatric Hematology Oncology Journal, 5(2), 30–36. https://doi.org/10.1016/J.PHOJ.2020.04.001

Author Biography

Aisya Nur Abida, University of Mataram

Author Origin : Indonesia

Downloads

Download data is not yet available.

How to Cite

Abida, A. N. (2024). Factors Affecting the Quality of Life of Children with Thalassemia: Literature Review. Jurnal Biologi Tropis, 24(1b), 604–609. https://doi.org/10.29303/jbt.v24i1b.8143

Most read articles by the same author(s)

Similar Articles

1 2 3 4 5 6 7 8 9 10 > >> 

You may also start an advanced similarity search for this article.