Evidence map›Paper›PMID 39468579›Full record

ArticleHealth and quality of life outcomes2024

Health-related quality of life and associated factors among children with Transfusion-dependent β-thalassaemia: a cross-sectional study in Guangxi Province.

Jingyi Qiao, Bingxing Luo, Jian Ming, Xinhua Zhang, Junling Weng, Qingwen Deng, Shanyan Zhou, Yingyao Chen

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Article in Health and quality of life outcomes, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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1citing papers in PubMed
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1 citing paper in PubMed.

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5 · Who and what money

Authors and funding

8 authors.

Jingyi QiaoSchool of Public Health, Fudan University, Shanghai, China.
Bingxing LuoSchool of Public Health, Fudan University, Shanghai, China.
Jian MingSchool of Public Health, Fudan University, Shanghai, China.
Xinhua ZhangDepartment of Hematology, 923rd Hospital of the People's Liberation Army, Nanning, Guangxi, China.
Junling WengSchool of Public Health, Fudan University, Shanghai, China.
Qingwen DengSchool of Public Health, Fudan University, Shanghai, China.
Shanyan ZhouSchool of Public Health, Fudan University, Shanghai, China.
Yingyao ChenSchool of Public Health, Fudan University, Shanghai, China. yychen@shmu.edu.cn.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundTransfusion-dependent β-thalassemia (TDT) is a severe inherited disorder. Without regular treatment, patients with TDT experience complications that can significantly shorten life expectancy and severely impact both their quality of life and that of their families. The condition has attracted significant attention in global health discussions. Due to the challenges of blood supply shortages, the high costs of iron chelation therapy, and hematopoietic stem cell transplantation (HSCT), TDT presents a serious health risk to patients and imposes a substantial burden on families and society. However, research on the health-related quality of life (HRQoL) of thalassemia patients in China remains limited. This study evaluated the factors affecting the HRQoL of these patients, with the goal of developing strategies to improve their quality of life.

methodsIn this cross-sectional study, children with TDT were recruited from five treatment centers in Guangxi, a province with a high prevalence of thalassemia in China. Structured questionnaires were employed to gather relevant data on sociodemographic variables, disease characteristics, treatments, and associated costs. The HRQoL was assessed using the Transfusion-Dependent Quality of Life (TranQoL) questionnaire, with a proxy version for patients aged 0-11 years and a child version for those aged 12-18 years.

resultsThe study included 418 participants, yielding an overall TranQoL score of 60.6 ± 16.3 among thalassemia patients. Multiple linear regression analysis revealed a negative correlation (P < 0.05) between overall TranQoL scores and several factors: increasing patient age, the presence of multiple thalassemia patients within a family, and undergoing HSCT. Conversely, adherence to regular treatment was positively correlated with higher TranQoL scores (P < 0.05).

conclusionThe study demonstrates that HRQoL among Chinese patients with TDT is at a low level. Age, treatment adherence, family support, and socioeconomic status were identified as key determinants influencing HRQoL. It is essential to further enhance and optimize health insurance policies and medical services to support comprehensive treatment strategies for these patients.

Indexed as

beta-ThalassemiaBlood TransfusionQuality of LifeAdolescentChildChild, PreschoolChinaCross-Sectional StudiesFemaleHumansInfantInfant, NewbornMaleSocioeconomic FactorsSurveys and QuestionnairesHealth-related quality of lifePatient-reported outcomesTranQoLTransfusion-dependent thalassaemia

Identifiers

PMID39468579
PMCPMC11520379

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.