Factors Related to the Quality of Life in Children with Transfusion-Dependent Thalassemia.

IF 1.2 4区医学 Q4 HEMATOLOGY Pediatric Hematology and Oncology Pub Date : 2024-04-01 Epub Date: 2024-02-29 DOI:10.1080/08880018.2023.2286962

Dea Aprilianti Permana, Susi Susanah, Riyadi Adrizain, Sri Endah Rahayuningsih, Meita Dhamayanti, Lulu Eva Rakhmilla

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Abstract

Objective: Increased survival rate of patients with Transfusion-dependent Thalassemia (TDT) should be in line with their good quality of life (QoL). The study aimed to analyze the relationship between sociodemographic factors and clinical characteristics with the QoL of children with TDT. Methods: A cross-sectional study was conducted at Hasan Sadikin General Hospital from December 2022 to February 2023. A total of 158 eligible subjects aged 5-18 years with TDT were included in the analysis. QoL assessment was performed using child self-report and parent-proxy report questionnaires, along with physical examination findings. Bivariate and multivariate analyses were conducted to analyze the data. Results: A total of 158 subjects who met the research criteria were included in the analysis. Of 58.9% of children with TDT had a low adherence rate to iron chelating therapy (ICT). School function had the lowest score in QoL based on child-self report and parent proxy. Gender (p<0,05) and adherence to ICT (p<0,05) were significantly associated with lower quality of life. Conclusion: Female and adherence to ICT were predictors of children with TDT's QoL.

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与输血依赖型地中海贫血患儿生活质量相关的因素。

目的：提高输血依赖型地中海贫血（TDT）患者的存活率应与其良好的生活质量（QoL）相一致。本研究旨在分析社会人口学因素和临床特征与地中海贫血患儿生活质量之间的关系。研究方法2022 年 12 月至 2023 年 2 月在哈桑-萨迪金总医院进行了一项横断面研究。共有 158 名符合条件的 5-18 岁 TDT 受试者被纳入分析范围。使用儿童自我报告和家长代理报告问卷以及体检结果进行了 QoL 评估。对数据进行了二元和多元分析。结果共有 158 名符合研究标准的受试者被纳入分析范围。58.9%的TDT患儿对螯合铁疗法（ICT）的依从性较低。根据儿童自我报告和家长代理报告，学校功能在QoL中得分最低。性别（p结论：女性和对 ICT 的依从性是影响 TDT 患儿 QoL 的预测因素。

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来源期刊

Pediatric Hematology and Oncology 医学-小儿科

CiteScore

2.60

自引率

5.90%

发文量

审稿时长

6-12 weeks

期刊介绍： PHO: Pediatric Hematology and Oncology covers all aspects of research and patient management within the area of blood disorders and malignant diseases of childhood. Our goal is to make PHO: Pediatric Hematology and Oncology the premier journal for the international community of clinicians and scientists who together aim to define optimal therapeutic strategies for children and young adults with cancer and blood disorders. The journal supports articles that address research in diverse clinical settings, exceptional case studies/series that add novel insights into pathogenesis and/or clinical care, and reviews highlighting discoveries and challenges emerging from consortia and conferences. Clinical studies as well as basic and translational research reports regarding cancer pathogenesis, genetics, molecular diagnostics, pharmacology, stem cells, molecular targeting, cellular and immune therapies and transplantation are of interest. Papers with a focus on supportive care, late effects and on related ethical, legal, psychological, social, cultural, or historical aspects of these fields are also appreciated. Reviews on important developments in the field are welcome. Articles from scientists and clinicians across the international community of Pediatric Hematology and Oncology are considered for publication. The journal is not dependent on or connected with any organization or society. All submissions undergo rigorous peer review prior to publication. Our Editorial Board includes experts in Pediatric Hematology and Oncology representing a wide range of academic and geographic diversity.