Studi Literatur: Kualitas Hidup Anak Usia Sekolah dengan Thalasemia
DOI:
https://doi.org/10.55110/mcj.v2i1.85Keywords:
thalassemia, age school, quality of lifeAbstract
Thalassemia major is a hematological single gene disorder that is inherited and can cause anemia in affected children, the impact of which in the world is a major public concern in Southeast Asia, including Indonesia. Indonesia is one of the countries in the thalassemia belt. In Indonesia, thalassemia major is more common and a serious health problem; about 3 – 10% of people carry the thalassemia gene due to abnormal hemoglobin production. More frequent visits to the hospital have a negative impact on children's lives in terms of physical burden, psychological burden and scholastic performance. The method used in this study is Literature review, method journal search using PICOT description and journal selection using Prism Diagram. Results of literature study in this study, the outcome as measured by PedsQL was quality of life. Questions were categorized into 4 domains: physical health, emotional health, family function and support and school and career functioning. In this study, we found that the HRQoL scores of TDT patients were higher in all dimensions compared to scores of similar studies. According to the results of several studies conducted, using the PedQL 4.0 instrument in pediatric and adolescent patients, either by distributing the instrument or by good interview technique. to patients and parents resulted in patients having a higher HRQoL in the psychosocial domain and the lowest in the education domain. This low value can be related to frequent visits to the hospital for blood transfusions or iron chelation therapy treatment so that children cannot go to school because of their perceived weakness and do not have sufficient energy to participate in school activities. So that children who do not go to school experience cognitive decline which has a negative impact on their quality of life.
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References
Abu Samra, O., Auda, W., Kamhawy, H., & Al-Tonbary, Y. (2015). Impact of educational programme regarding chelation therapy on the quality of life for B-thalassemia major children. Hematology, 20(5), 297–303. https://doi.org/10.1179/1607845414Y.0000000197
Chordiya, K., Katewa, V., Sharma, P., Deopa, B., & Katewa, S. (2018). Quality of Life (QoL) and the Factors Affecting it in Transfusion-dependent Thalassemic Children. The Indian Journal of Pediatrics, 85(11), 978–983. https://doi.org/10.1007/s12098-018-2697-x
Gharaibeh, H. F., & Gharaibeh, M. K. (2012). Factors influencing health-related quality of life of thalassaemic Jordanian children. Child: Care, Health and Development, 38(2), 211–218. https://doi.org/10.1111/j.1365-2214.2011.01224.x
Kaheni, S., Yaghobian, M., Sharefzadah, G. H., Vahidi, A., Ghorbani, H., & Abderahemi, A. (2013). Quality of life in children with β-thalassemia major at center for special diseases. Iranian Journal of Pediatric Hematology and Oncology, 3(3), 108–113. http://www.ncbi.nlm.nih.gov/pubmed/24575281%0Ahttp://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC3921875
Mediani, Henny S., Nurhidayah, I., Lusiani, L., & Panigoro, R. (2021). Predicting factors impact to quality of life of school age Thalassemic children in Indonesia. Journal Of Advanced Pharmacy Education And Research, 11(1), 81–85. https://doi.org/10.51847/65grcUX
Mevada, S. T., Al Saadoon, M., Zachariah, M., Al Rawas, A. H., & Wali, Y. (2016). Impact of Burden of Thalassemia Major on Health-related Quality of Life in Omani Children. Journal of Pediatric Hematology/Oncology, 38(5), 384–388. https://doi.org/10.1097/MPH.0000000000000565
Mulyani, M., & Fahrudin, A. (2011). Reaksi Psikososial terhadap Penyakit di Kalangan Anak Penderita Talasemia Mayor di Kota Bandung. Sosio Informa, 16(3), 157–176. https://doi.org/10.33007/inf.v16i3.52
Nurvitasari, J., Mardhiyah, A., & Nurhidayah, I. (2019). Masalah Psikososial pada Penyandang Talasemia Usia Sekolah di Poliklinik Talasemia RSUD Sumedang. Jurnal Keperawatan Komprehensif (Comprehensive Nursing Journal), 5(1), 55–63. https://doi.org/10.33755/jkk.v5i1.129
Saha, R., Misra, R., & Saha, I. (2015). Health Related Quality of Life and its Predictors among Bengali Thalassemic Children Admitted to a Tertiary Care Hospital. The Indian Journal of Pediatrics, 82(10), 909–916. https://doi.org/10.1007/s12098-014-1670-6
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), 141. https://doi.org/10.1186/s12955-020-01381-5
Surapolchai, P., & Sinlapamongkolkul, P. (2020). Health-Related Quality of Life in Thai Children with Thalassemia as Evaluated by PedsQL and EQ-5D-Y: A Single-Center Experience. Mediterranean Journal of Hematology and Infectious Diseases, 12(1), e2020036. https://doi.org/10.4084/mjhid.2020.036
Yasmeen, H., & Hasnain, S. (2018). Quality of Life of Pakistani Children with β-Thalassemia Major. Hemoglobin, 42(5–6), 320–325. https://doi.org/10.1080/03630269.2018.1553183
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