Radke Taylor, Paulukonis Susan, Hulihan Mary M, Feuchtbaum Lisa
Synergy America Inc., Division of Blood Disorders.
Public Health Institute, Oakland.
J Pediatr Hematol Oncol. 2019 Oct;41(7):e421-e426. doi: 10.1097/MPH.0000000000001573.
In recent years, California has experienced a steady rise in Asian immigration which has led to a corresponding increased prevalence of clinically significant thalassemia in this state. As part of the Public Health Research, Education and Surveillance for Hemoglobinopathies emoglobinopathies project, a survey was developed to collect information from California providers who care for thalassemia patients in an effort to better understand their practice patterns, barriers to providing care, and educational needs. When asked about educational needs, providers most frequently expressed a desire for care and management guidelines (65.3%), health educational materials for patients (47.2%), and information on complications and clinical outcomes (32.1%). Only one quarter of providers (24.0%) reported that all of their thalassemia patients have a coordinated care plan. The increase in California thalassemia cases highlights the importance of provider knowledge to effectively serve the patients in their communities. Provider education and dissemination of treatment standards can not only improve knowledge about the disease but also increase awareness about the importance of coordinating care among a multidisciplinary team of specialists. Improvement in these areas will help achieve the overarching goal of better outcomes and quality of life for patients with thalassemia.
近年来，加利福尼亚州的亚洲移民数量稳步上升，这导致该州具有临床意义的地中海贫血患病率相应增加。作为血红蛋白病公共卫生研究、教育和监测项目的一部分，开展了一项调查，旨在从加利福尼亚州照料地中海贫血患者的医疗服务提供者那里收集信息，以便更好地了解他们的医疗实践模式、提供护理的障碍以及教育需求。当被问及教育需求时，医疗服务提供者最常表达的愿望是获得护理和管理指南（65.3%）、面向患者的健康教育材料（47.2%）以及有关并发症和临床结果的信息（32.1%）。只有四分之一的医疗服务提供者（24.0%）报告称他们所有的地中海贫血患者都有协调护理计划。加利福尼亚州地中海贫血病例的增加凸显了医疗服务提供者的知识对于有效服务其所在社区患者的重要性。对医疗服务提供者进行教育并传播治疗标准，不仅可以提高对该疾病的认识，还能增强对多学科专家团队之间协调护理重要性的认识。在这些领域取得进展将有助于实现改善地中海贫血患者的总体治疗效果和生活质量这一目标。
