Quality of life assessment of children with thalassemia
Background Thalassemia is a chronic disease that is becoming a major health problem in the world, including the Mediterranean, as well as Malaysia, Thailand and Indonesia. This condition clearly affects the patient's quality of life, because of the condition itself and the effects of treatment....
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Indonesian Pediatric Society Publishing House
2011-06-01
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| Series: | Paediatrica Indonesiana |
| Subjects: | |
| Online Access: | https://paediatricaindonesiana.org/index.php/paediatrica-indonesiana/article/view/719 |
| _version_ | 1818291715414425600 |
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| author | Masyitah Sri Wahyuni Muhammad Ali Nelly Rosdiana Bidasari Lubis |
| author_facet | Masyitah Sri Wahyuni Muhammad Ali Nelly Rosdiana Bidasari Lubis |
| author_sort | Masyitah Sri Wahyuni |
| collection | DOAJ |
| description | Background Thalassemia is a chronic disease that is becoming a major health problem in the world, including the Mediterranean, as well as Malaysia, Thailand and Indonesia. This condition clearly affects the patient's quality of life, because of the condition itself and
the effects of treatment. Assessment is needed to detennine actions to be taken to improve the quality of life in thalassemic children.
Objective To assess the differences in quality of life of thalassemic children compared to their normal siblings.
Methods We perfonned a crosssectional study from May 2010 until June 2010 in H. Adam Malik Hospital, Medan and the home of a member of the North Sumatra Chapter of the Association of Parents of Thalassemia Sufferers (perhimpunan Orangtua Penderita
Talasemia Indonesia, POPTI). Thalassemic children aged 5-18 years and their age and genderadjusted siblings were divided into two groups: case group and control group. Parents and children were asked to fill the PedsQL (Pediatric Quality of life Inventory)
version 4.0 questionnaire to assess their quality of life.
Results There were 59 children in each group. The assessments of four quality of life domains in the thalassemic group vs the control group showed the folloMng: physical function 53.1 vs 71.5 (95% CI -21.41 to -15.26, PO.OOOI), emotional function 50.9 vs 62.9 (95% CI -16.82 to -7 .41, PO.OOO 1), social function 62.5 vs 72.8 (95% CI-13.50 to -7.01, PO.OOOI) and school function 36.2 vs 56.0 (95% CI -22.95 to -16.71, PO.OOOI). Total scores were 50.9 vs 66.1 (95% CI -18.20to -13.12, PO.OOOI). School function was the most affected parameter studied, with thalassemic children scoring lower than the control group.
Conclusion There were significant decreases in the quality of life parameters in the thalassemic group compared to the control group. Thalassemic children have poorer quality oflife compared to their nonnal siblings, Mth school function being the most
affected domain. |
| first_indexed | 2024-12-13T02:48:28Z |
| format | Article |
| id | doaj.art-df2da6b513e74fdfab6bd416e1d62e9a |
| institution | Directory Open Access Journal |
| issn | 0030-9311 2338-476X |
| language | English |
| last_indexed | 2024-12-13T02:48:28Z |
| publishDate | 2011-06-01 |
| publisher | Indonesian Pediatric Society Publishing House |
| record_format | Article |
| series | Paediatrica Indonesiana |
| spelling | doaj.art-df2da6b513e74fdfab6bd416e1d62e9a2022-12-22T00:02:07ZengIndonesian Pediatric Society Publishing HousePaediatrica Indonesiana0030-93112338-476X2011-06-01513163910.14238/pi51.3.2011.163-9586Quality of life assessment of children with thalassemiaMasyitah Sri Wahyuni0Muhammad Ali1Nelly Rosdiana2Bidasari Lubis3Department of Child Health, University of Sumatera Utara Medical School/H. Adam Malik Hospital, Medan, North SumateraDepartment of Child Health, University of Sumatera Utara Medical School/H. Adam Malik Hospital, Medan, North SumateraDepartment of Child Health, University of Sumatera Utara Medical School/H. Adam Malik Hospital, Medan, North SumateraDepartment of Child Health, University of Sumatera Utara Medical School/H. Adam Malik Hospital, Medan, North SumateraBackground Thalassemia is a chronic disease that is becoming a major health problem in the world, including the Mediterranean, as well as Malaysia, Thailand and Indonesia. This condition clearly affects the patient's quality of life, because of the condition itself and the effects of treatment. Assessment is needed to detennine actions to be taken to improve the quality of life in thalassemic children. Objective To assess the differences in quality of life of thalassemic children compared to their normal siblings. Methods We perfonned a crosssectional study from May 2010 until June 2010 in H. Adam Malik Hospital, Medan and the home of a member of the North Sumatra Chapter of the Association of Parents of Thalassemia Sufferers (perhimpunan Orangtua Penderita Talasemia Indonesia, POPTI). Thalassemic children aged 5-18 years and their age and genderadjusted siblings were divided into two groups: case group and control group. Parents and children were asked to fill the PedsQL (Pediatric Quality of life Inventory) version 4.0 questionnaire to assess their quality of life. Results There were 59 children in each group. The assessments of four quality of life domains in the thalassemic group vs the control group showed the folloMng: physical function 53.1 vs 71.5 (95% CI -21.41 to -15.26, PO.OOOI), emotional function 50.9 vs 62.9 (95% CI -16.82 to -7 .41, PO.OOO 1), social function 62.5 vs 72.8 (95% CI-13.50 to -7.01, PO.OOOI) and school function 36.2 vs 56.0 (95% CI -22.95 to -16.71, PO.OOOI). Total scores were 50.9 vs 66.1 (95% CI -18.20to -13.12, PO.OOOI). School function was the most affected parameter studied, with thalassemic children scoring lower than the control group. Conclusion There were significant decreases in the quality of life parameters in the thalassemic group compared to the control group. Thalassemic children have poorer quality oflife compared to their nonnal siblings, Mth school function being the most affected domain.https://paediatricaindonesiana.org/index.php/paediatrica-indonesiana/article/view/719thalassemianormal siblingsquality of lifePedsQL |
| spellingShingle | Masyitah Sri Wahyuni Muhammad Ali Nelly Rosdiana Bidasari Lubis Quality of life assessment of children with thalassemia Paediatrica Indonesiana thalassemia normal siblings quality of life PedsQL |
| title | Quality of life assessment of children with thalassemia |
| title_full | Quality of life assessment of children with thalassemia |
| title_fullStr | Quality of life assessment of children with thalassemia |
| title_full_unstemmed | Quality of life assessment of children with thalassemia |
| title_short | Quality of life assessment of children with thalassemia |
| title_sort | quality of life assessment of children with thalassemia |
| topic | thalassemia normal siblings quality of life PedsQL |
| url | https://paediatricaindonesiana.org/index.php/paediatrica-indonesiana/article/view/719 |
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