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An urgent need for improving thalassemia care due to the wide gap in current real-life practice and clinical practice guidelines
Scientific Reports ( IF 3.8 ) Pub Date : 2021-06-24 , DOI: 10.1038/s41598-021-92715-w
Supachai Ekwattanakit 1 , Chattree Hantaweepant 2 , Archrob Khuhapinant 2 , Noppadol Siritanaratkul 2 , Vip Viprakasit 1, 3
Affiliation  

Based on Thalassemia International Federation clinical practice guidelines (CPG) for non-transfusion dependent and transfusion dependent thalassemia, several measures should be routinely implemented such as monitoring and surveillance of thalassemia related complications for early detection and proper clinical management. To evaluate the prevalence and the performance of routine surveillance for thalassemia related complications during 2 periods; before and after published CPGs (2012–2014 vs 2015–2017), data from 524 adult thalassemia patients attended at Siriraj hospital were compared among different treating physician groups; thalassemia, private hematology, and internal medicine clinics. Three most common complications were osteopenia/osteoporosis (69.8%), gallstones (67.6%) and abnormal vitamin D level (67.6%). Iron overload has been widely evaluated (93.1%) followed by liver function test (82.3%). However, the rate of evaluation for other complications were significantly reduced and < 25% of patients were evaluated in several complications. Comparing among clinics, the surveillance rate has increased significantly for several endocrine complications only in patients treated at thalassemia clinic but not in others. This study was the first study that evaluated real-world practical management of thalassemia patient in terms of complication surveillance. This different clinical practice has called for an immediate policy change to improve and standardize a care for thalassemia patients in Thailand.



中文翻译:

由于当前现实生活实践和临床实践指南存在巨大差距,迫切需要改善地贫护理

根据地贫国际联合会针对非输血依赖和输血依赖地贫的临床实践指南 (CPG),应常规实施多项措施,例如监测和监测地贫相关并发症,以便及早发现和适当的临床管理。评估地中海贫血相关并发症在 2 个时期内的流行率和常规监测的表现;在公布 CPG 之前和之后(2012-2014 年与 2015-2017 年),在 Siriraj 医院就诊的 524 名成人地贫患者的数据在不同的治疗医师组之间进行了比较;地中海贫血、私人血液学和内科诊所。三种最常见的并发症是骨质减少/骨质疏松症 (69.8%)、胆结石 (67.6%) 和维生素 D 水平异常 (67.6%)。铁过载已被广泛评估 (93.1%),其次是肝功能测试 (82.3%)。然而,其他并发症的评估率显着降低,< 25% 的患者在几种并发症中进行了评估。与诊所相比,几种内分泌并发症的监测率仅在地贫诊所治疗的患者中显着增加,而在其他诊所则没有。这项研究是第一项在并发症监测方面评估地贫患者现实世界实际管理的研究。这种不同的临床实践要求立即改变政策,以改善和规范泰国地贫患者的护理。25% 的患者接受了几种并发症的评估。与诊所相比,几种内分泌并发症的监测率仅在地贫诊所治疗的患者中显着增加,而在其他诊所则没有。这项研究是第一项在并发症监测方面评估地贫患者现实世界实际管理的研究。这种不同的临床实践要求立即改变政策,以改善和规范泰国地贫患者的护理。25% 的患者接受了几种并发症的评估。与诊所相比,几种内分泌并发症的监测率仅在地贫诊所治疗的患者中显着增加,而在其他诊所则没有。这项研究是第一项在并发症监测方面评估地贫患者现实世界实际管理的研究。这种不同的临床实践要求立即改变政策,以改善和规范泰国地贫患者的护理。这项研究是第一项在并发症监测方面评估地贫患者现实世界实际管理的研究。这种不同的临床实践要求立即改变政策,以改善和规范泰国地贫患者的护理。这项研究是第一项在并发症监测方面评估地贫患者现实世界实际管理的研究。这种不同的临床实践要求立即改变政策,以改善和规范泰国地贫患者的护理。

更新日期:2021-06-24
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