马来西亚依赖输血治疗的地中海贫血患儿的健康相关生活质量：一项横断面研究。
Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia.
机构信息
Discipline of Social & Administrative Pharmacy, School of Pharmaceutical Science, Universiti Sains Malaysia, Minden, 11800, Pulau Pinang, Malaysia.
Institutional Planning and Strategic Centre, Universiti Sains Malaysia, Minden, 11800, Penang, Malaysia.
出版信息
Health Qual Life Outcomes. 2020 May 14;18(1):141. doi: 10.1186/s12955-020-01381-5.
BACKGROUND
The treatment of children with transfusion-dependent thalassemia (TDT) in Malaysia has progressed since 2005. This study provides an updated health-related quality of life (HRQoL) assessment for children with the disorder and the factors affecting the HRQoL.
METHODS
A cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis.
RESULTS
A total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87). Predictors for a lower TSS was an increasing age group and the use of dual chelating agents (R = 0.057, F (4, 359) = 5.40, p = < 0.001). The mean (SD) Physical Health Summary Score (PHSS) was 82.21 (16.82). Predictors of a higher PHSS score was being male, while predictors of a lower score was an increasing age group and parent-proxy reports(R = 0.075, F (5,358) = 5.80, p = < 0.001). The mean (SD) Psychosocial Health Summary Score (PCHS) was 79.39 (14.81). Predictors for a lower PCHS was the use of dual chelating agents(R = 0.041, F (1, 362) = 15.60, p = < 0.001). The school functioning score had the lowest mean (SD) score of 69.52(20.92) in the psychosocial dimension.
CONCLUSION
The HRQoL of TDT children in Malaysia has improved over the last decade owing to the better access in treatment. However, further effort is needed to improve the school functioning dimension.
背景
自 2005 年以来，马来西亚对输血依赖型地中海贫血（TDT）患儿的治疗取得了进展。本研究对该疾病患儿的健康相关生活质量（HRQoL）进行了更新评估，并分析了影响 HRQoL 的因素。
方法
采用 PedsQL™ 4.0 通用核心量表对马来西亚 TDT 患儿进行了横断面 HRQoL 调查。排除非输血依赖型地中海贫血和其他血红蛋白病患者。采用多阶段便利抽样法获得患儿及其父母的 HRQoL 评分。采用关联、相关和回归分析测试 HRQoL 评分与人口统计学因素之间的关系。
结果
共纳入 368 例患儿。总总结分（TSS）的平均值（标准差）为 80.12（13.87）。年龄组增加和使用双螯合剂是 TSS 较低的预测因素（R=0.057，F（4，359）=5.40，p<0.001）。生理健康总结分（PHSS）的平均值（标准差）为 82.21（16.82）。男性是 PHSS 评分较高的预测因素，而年龄组增加和父母报告是评分较低的预测因素（R=0.075，F（5，358）=5.80，p<0.001）。心理社会健康总结分（PCHS）的平均值（标准差）为 79.39（14.81）。使用双螯合剂是 PCHS 较低的预测因素（R=0.041，F（1，362）=15.60，p<0.001）。心理社会维度中，学校功能评分的平均值（标准差）最低，为 69.52（20.92）。
结论
由于治疗机会的增加，马来西亚 TDT 患儿的 HRQoL 在过去十年中有所改善。然而，仍需要进一步努力改善学校功能维度。
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