Quality of Life of Children with Thalassemia in Indonesia: Review

Rahmah Rahmah, Sri Nabawiyati Nurul Makiyah

Abstract


Background: Thalassemia is an inherited disorder of hemoglobin (Hb) synthesis. Treatment of thalassemia has not yet reached the level of cure. Globally, the management of thalassemia is symptomatic in the form of lifelong blood transfusions. Data on children with thalassemia major in Indonesia has not been widely published. However, various studies clearly showed growth and development disorders and behavior that greatly affected the quality of life of children with thalassemia. Blood transfusions and lifelong use of drugs often lead to feelings of boredom of treatment, not to mention physical changes and the feeling of being different from relatives or friends that will cause the feeling of inferiority. They often drop out of school and do not find work, which causes highly severe psychosocial effects.

Objective: This paper aims to provide an overview of the quality of life of children with thalassemia in Indonesia so that it can be used as a reference in providing appropriate management regarding the quality of life of children with thalassemia.

Methods: This literature search used google scholar and pubmed for complete publications in 2010-2020 with the keywords "quality of life", "thalassemia children," and "Indonesia”.

Result: There were six research articles related to this search. Indonesia's average quality of life for children with thalassemia ranged from 50% to 67.2%.

Conclusion: Of the four domains assessed, school function had the lowest average, followed by emotional, physical and social function. Child health services need to optimize children's functional abilities and quality of life.


Keywords


Children; Indonesia; Thalassemia; Quality of Life

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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. https://doi.org/10.18203/2349-3291.ijcp20185203

Arian, M., Soleimani, M., Fakhr-Movahedi, A., Oghazian, M. B., & Badiee, Z. (2020). Quality of Life in Patients with Thalassemia Major: A Concept Analysis Using Rodgers’ Evolutionary Method. International Journal of Pediatrics, 8(5), 11197–11217. https://doi.org/10.22038/IJP.2019.42126.3547

Armina, A., & Pebriyanti, D. K. (2021). Hubungan Kepatuhan Transfusi Darah dan Kelasi Besi dengan Kualitas Hidup Anak Thalasemia. Jurnal Akademika Baiturrahim Jambi, 10(2), 306. https://doi.org/10.36565/jab.v10i2.336

Bains, M. (2020). A Study to Assess the Quality of Life among children with Thalassemia and its Relationship with Selected Factors in Selected Hospitals of Delhi. Indian Journal of Youth & Adolescent Health, 6(3), 1–7. https://doi.org/10.24321/2349.2880.201911

Bakthavatchalam, P. (2019). ASSESSMENT OF QUALITY OF LIFE AMONG PARENTS OF CHILDREN WITH THALASSEMIA. International Journal of Advanced Research, 7(8), 1074–1083. https://doi.org/10.21474/IJAR01/9595

Batool, N., Saleem, Z., Saeed, H., Yasmeen, S., Anwar, R., Ahmad, F., Tauqeer, F., & Mahboob, M. (2022). Factors affecting health-related quality of life (HRQoL) in Pakistani children with thalassemia. Family Medicine & Primary Care Review, 24(1), 37–42. https://doi.org/10.5114/fmpcr.2022.113012

Halim-Fikri, B. H., Lederer, C. W., Baig, A. A., Mat-Ghani, S. N. A., Syed-Hassan, S.-N. R.-K., Yusof, W., Abdul Rashid, D., Azman, N. F., Fucharoen, S., Panigoro, R., Silao, C. L. T., Viprakasit, V., Jalil, N., Mohd Yasin, N., Bahar, R., Selvaratnam, V., Mohamad, N., Nik Hassan, N. N., Esa, E., … Zilfalil, B. A. (2022). Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries. Journal of Personalized Medicine, 12(4), 552. https://doi.org/10.3390/jpm12040552

Hassan, S. M. E., & Azzab, S. E. S. H. I. el. (2016). Study of the Health Instructions Effect on Quality of Life and Psychological Problems among Children with Thalassemia. International Journal of Studies in Nursing, 1(1), 16. https://doi.org/10.20849/ijsn.v1i1.92

Hastuti, R. P. (2014). PENGARUH PAKET EDUKASI TALASEMIA (PEdTal) TERHADAP KUALITAS HIDUP ANAK TALASEMIA. Jurnal Kesehatan, 5(2), 137–144. http://dx.doi.org/10.26630/jk.v5i2.45

Isworo, A., Setiowati, D., & Taufik, A. (2012). Kadar hemoglobin, status gizi, pola konsumsi makanan dan Kualitas hidup pasien Thalassemia. Jurnal Keperawatan Soedirman, 7(3), 183–189. http://dx.doi.org/10.20884/1.jks.2012.7.3.406

Kaheni, S., Yaghobian, M., Sharefzadah, G. H., & Vahidi, A. (2013). Quality of life in children with a β-thalassemia major at center for special diseases. Iranian Journal of Pediatric Hematology & Oncology, 3(3), 108–113.

Kamil, J., Gunantara, T., & Suryani, Y. D. (2020). Analisis Faktor-Faktor yang Memengaruhi Kualitas Hidup Penderita Talasemia Anak di RSUD Al-Ihsan Kabupaten Bandung Tahun 2019. Jurnal Integrasi Kesehatan & Sains, 2(2). https://doi.org/10.29313/jiks.v2i2.5848

Kavitha, K., & Padmaja, A. (2019). Health-Related Quality of Life and Its Associated Factors among Thalassemic Children: a Review. International Journal of Health Sciences and Research, 9(5), 386–389.

Keputusan Menteri Kesehatan tentang Manajemen Thalassemia, (2018). https://www.persi.or.id/images/regulasi/kepmenkes/kmk12018.pdf

Mardhiyah, A., Philip, K., Mediani, H. S., & Yosep, I. (2020). The Association between Hope and Quality of Life among Adolescents with Chronic Diseases: A Systematic Review. Child Health Nursing Research, 26(3), 323–328. https://doi.org/10.4094/chnr.2020.26.3.323

Mariani, D., Rustina, Y., & Nasution, Y. (2014). Analisis Faktor yang Memengaruhi Kualitas Hidup Anak Thalassemia Beta Mayor. Jurnal Keperawatan Indonesia, 17(1), 1–10. https://doi.org/10.7454/jki.v17i1.375

Nikmah, M., & Mauliza, M. (2018). Kualitas Hidup Penderita Talasemia berdasarkan Instrumen Pediatric Quality of Life Inventory 4.0 Generic Core Scales di Ruang Rawat Anak Rumah Sakit Umum Cut Meutia Aceh Utara. Sari Pediatri, 20(1), 11. https://doi.org/10.14238/sp20.1.2018.11-6

Pranajaya, R., & Nurchairina. (2016). FAKTOR YANG BERHUBUNGAN DENGAN KUALITAS HIDUP ANAK THALASEMIA. Jurnal Ilmiah Keperawatan Sai Betik, 12(1), 130–139. http://dx.doi.org/10.26630/jkep.v12i1.370

Ramadhanti, I., Patimah, I., & Kusnadi, E. (2020). Hubungan Keteraturan Pemakaian Kelasi Besi Dengan Kualitas Hidup Anak Penyandang Thalassemia. Jurnal Medika Cendekia, 7(2), 118–126. https://doi.org/10.33482/medika.v7i02.148

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

Sharma, S., Seth, B., Jawade, P., Ingale, M., & Setia, M. S. (2017). Quality of Life in Children with Thalassemia and their Caregivers in India. The Indian Journal of Pediatrics, 84(3), 188–194. https://doi.org/10.1007/s12098-016-2267-z

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 Pediatrics, 19(1), 100. https://doi.org/10.1186/s12887-019-1466-y

Torcharus, K., & Pankaew, T. (2011). Health-related quality of life in Thai Thalassemic children treated with iron chelation. The Southeast Asian Journal of Tropical Medicine and Public Health, 42(4), 951–959.

Wahyuni, M. S., Ali, M., Rosdiana, N., & Lubis, B. (2011). Quality of life assessment of children with thalassemia. Paediatrica Indonesiana, 51(3), 163. https://doi.org/10.14238/pi51.3.2011.163-9

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




DOI: https://doi.org/10.18196/ijnp.v6i1.10477

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