FACTORS RELATED TO QUALITY OF LIFE AMONG CHILDREN WITH THALASSEMIA MAJOR: A LITERATURE REVIEW
Abstract
Background: Thalassemia major is a chronic disease in children that harms children quality of life by interrupting physical function, emotional function, social function, and school function. Objectives: This study aims to identify factors contributed to quality of life among children with thalassemia major. Design: The research design used systematic review based on the PRISMA guideline. Data Sources: The source of the articles used three databases including Pubmed, Science Direct, and NCBI with keywords: “quality of life” AND “children” AND “thalassemia major”. The articles were searched from July to September 2021. Review Methods: The data in this study were obtained by reviewing articles from previous studies using PRISMA checklist and PICOS. To assess the quality of article, JBI Critical Appraisal Tools was also used as a guideline. Results: There were 6 articles reviewed according to the inclusion criteria. All the studies showed that the score of quality of life among children with thalassemia major was lower than that of healthy children. The school function among children with thalassemia major was known to have the lowest score from this review. Factors contributed to quality of life among children with thalassemia major according to this review were chelation therapy, pretransfusion hemoglobin, age during the first transfusion, frequency of transfusion, child’s age, family income, parents’ education, hepatomegaly, body mass index, and serum ferritin levels. Conclusion: This review notifies the necessity of developing strategies in improving the quality of life of children with thalassemia major that involves parents, health services, schools, and the government.Downloads
References
Ankush, A., Dias, A., Silveira, M. P., Talwadker, Y., & Souza, J. P. (2018). Quality of life in children with thalassemia major following up at a tertiary care center in India (GOTQoL). International Journal of Contemporary Pediatrics, 6(1), 168. doi:10.18203/2349-3291.ijcp20185203
Ansari, S., Baghersalimi, A., Azarkeivan, A., Nojomi, M., & Hassanjadeh, A. (2014). Quality of life in patients with thalassemia major. Iranian Journal of Pediatric Hematology Oncology, 4(2), 57-43.
Asyikeen, W., Azrin, S., Zulkifli, M., & Zilfalil, B. (2017). Factors affecting health-related quality of life among pediatric patients with thalassemia: A literature review. Malaysian Journal of Paediatrics and Child Health, 23(1), 1-15.
Bazi, A., Sargazi-aval, O., Safa, A., & Miri-moghadam, E. (2017). Health-related quality of life and associated factors among thalassemia major patients, Southeast of Iran. Journal of Pediatric Hematology Oncology, 00(00), 1-5.
Biswas, B., Naskar, N. N., Basu, K., Dasgupta, A., Basu, R., & Paul, B. (2021). Malnutrition, Its Attributes, and Impact on Quality of Life: An Epidemiological Study among beta-Thalassemia Major Children. Korean J Fam Med, 42(1), 66-72. doi:10.4082/kjfm.19.0066
Caocci, G., Efficace, F., & Ciotti, F. (2012). Health related quality of life in Middle Eastern children with beta-thalassemia. BMC Blood Disord, 12(6), 1-7. doi:10.1186/1471-2326-12-6
Dhirar, N., Khandekar, J., Bachani, D., & Mahto, D. (2016). Thalassemia Major: how do we improve quality of life? Springerplus, 5(1), 1895. doi:10.1186/s40064-016-3568-4
Ejaz, M. S., Baloch, S., & Arif, F. (2015). Efficacy and adverse effects of oral chelating therapy (deferasirox) in multi-transfused Pakistani children with beta-thalassemia major. Pak J Med Sci, 31(3), 621-625. doi:10.12669/pjms.313.6972
Federation, T. I. (2014). Guidelines for the Management of Transfusion Dependent Thalassemia (TDT)(3 ed.). Retrieved from www.thalassaemia.org.cy/publications/tif-publications/guidelines-for-themanagement-of-transfusion-dependent-thalassaemia-3rd-edition-2014
Haghpanah, S. (2013). Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire. Sao Paulo Medical Journal, 131(3). doi:https://doi.org/10.1590/1516-3180.2013.1313470
Hamdy, M., Draz, I. H., El Sayed, I. T., Ayad, A., & Salemd, M. (2021). Assessment of quality of life among beta thalassemia major patients attending the hematology outpatient clinics at Cairo University Hospital. Public Health Disease Control, 9(E), 156-160.
Hashemizadeh, H., Noori, R., & Kolagari, S. (2012). Assessment hepatomegaly and liver enzymes in 100 patients with beta thalassemia major in Mashhad, Iran. Iranian Journal of Pediatric Hematology Oncology, 2(4), 171-177.
Hockenberry, M., Wilson, D., & Rodgers, C. (2016). Wong's Essential of Pediatric Nursing 10th Edition. St. Louis: Elsevier-Mosby.
Ismail, M. (2013). Quality of life among thalassemia children, adolescents, and their caregivers Sains Malaysiana, 42(3), 373-380.
Kemenkes. (2019). Angka Pembawa Sifat Talasemia Tergolong Tinggi. Retrieved from https://www.kemkes.go.id/article/view/19052100003/angka-pembawa-sifat-talasemia-tergolong-tinggi.html
Khodashenas, M., Mardi, P., Taherzadeh-Ghahfarokhi, N., Tavakoli-Far, B., Jamee, M., & Ghodrati, N. (2021). Quality of Life and Related Paraclinical Factors in Iranian Patients with Transfusion-Dependent Thalassemia. J Environ Public Health, 2021, 2849163. doi:10.1155/2021/2849163
Mikael, N. A., & Al-Allawi, N. A. (2018). Factors affecting quality of life in children and adolescents with thalassemia in Iraqi Kurdistan. Saudi Med J, 39(8), 799-807. doi:10.15537/smj.2018.8.23315
Rujito, L. (2019). Talasemia: Genetik Dasar dan Pengelolaan Terkini Purwokerto Universitas Jenderal Soedirman.
Sazlina, S., Asauji, Y., & Juni, M. (2015). Predictors of health-related quality of life among children and adolescents with beta thalassemia in three hospitals in Malaysia: a cross sectional study. International Journal of Public Health and Clinical Sciences, 2(2), 1-2.
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 Qual Life Outcomes, 18(1), 141. doi:10.1186/s12955-020-01381-5
Shah, F. T., Sayani, F., Trompeter, S., Drasar, E., & Piga, A. (2019). Challenges of blood transfusions in beta-thalassemia. Blood Rev, 37, 100588. doi:10.1016/j.blre.2019.100588
Sultana, R., Humayun, S., Noor, T., & Zafar, U. (2016). Impact of thalassemia on quality of life Journal of the Society of Obstetricians and Gynaecologists of Pakistan, 6(4), 156-160.
Surapolchai, P., Satayasai, W., Sinlapamongkolkul, P., & Udomsubpayakul, U. (2010). Biopsychosocial predictors of health-related quality of life in children with thalassemia in Thammasat University Hospital. Journal Medical Association Thailand, 93 Suppl 7, 65-75.
Taher, A. T., & Saliba, A. N. (2017). Iron Overload in Thalassemia: Diferent Organs at Different Rates. Hematology Am Soc Hematol Educ Program, 1, 265-271. doi:10.1182/asheducation-2017.1.265
Thiyagarajan, A., Bagavandas, M., & Kosalram, K. (2019). Assessing the role of family well-being on the quality of life of Indian children with thalassemia. BMC Pediatr, 19(1), 100. doi:10.1186/s12887-019-1466-y
Wahidiyat, P. A., & Iskandar, S. D. (2018). The importance of maintaining High Pre-Transfusion Hemoglobin Level in Thalassemia Major Patients. eJournal Kedokteran Indonesia, 6(3), 197-200. doi:10.23886/ejki.6.10142
Yildiz, D., Suluhan, D., Fidanci, B. E., Kiziler, E., & Boyraz, G. (2016). Determining the Relationship between Self-Esteem, Body Image, and Anxiety Levels of Children with Thalassemia. Journal of the American Acadeny of Child and Adolescent Psychiatry, 55(10), s209. doi:10.1016/j.jaac.2016.09.336
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