Improving Access to Hydroxyurea for Adults with Sickle Cell Disease

描述(由申请人提供)： 我们的总体目标是提高成人镰状细胞病患者对羟基尿素的利用率。羟基脲(HU)疗法是目前唯一可用于治疗成人镰状细胞性贫血(SCA)患者的疾病改良剂。美国国立卫生研究院最近的一个共识小组回顾了关于HU治疗SCD的现有证据，发现它是安全、有效和有效的(Brawley等人，2008年)。这项审查还发现，胡的利用率严重不足。我们之前已经确定了使用HU的提供者障碍，其中包括对患者依从性的许多担忧和对毒性的担忧。由于SCD是一种罕见的疾病，将需要一项大型的多状态研究来测试干预措施，以提高这一患者群体对HU的利用。这一大型试验的设计将需要HEM/ONC提供商的参与 在一项基于网络的干预中，旨在提高知识并减少开HU的障碍，然后将他们的患者随机分配到干预中，以提高依从性。这项大型多中心试验的主要目的将是证明，干预措施减少了符合HU条件的SCD成年人的医院和急诊室就诊次数。这笔R34拨款的目的是收集进行更大规模研究所需的数据。有了这笔赠款，我们很好地描述了社区血液学家/肿瘤学家看的患者的特征(Aim1)，改进和测试(目标2)行为干预，旨在减少导致血液学家/肿瘤学家不愿给SCD患者开HU的信息和态度因素，并最终评估培训诊所工作人员为患者提供问题解决以提高对HU依从性的可行性(目标3)。根据我们以前对HU提供者识别障碍的研究数据，我们的中心假设是血液学家/肿瘤学家缺乏关于HU管理的知识，以及缺乏适当的工具来克服HU的使用障碍，这极大地促进了HU的未充分利用。

DESCRIPTION (provided by applicant): Our overall goal is to improve utilization of hydroxyurea for adults with sickle cell disease. Hydroxyurea (HU) therapy is currently the only disease-modifying pharmaceutical agent available to treat adult patients with sickle cell anemia (SCA). A recent NIH consensus panel reviewed the available evidence regarding HU treatment for SCD and found it to be safe, efficacious, and effective (Brawley et al., 2008). This review also found HU to be highly underutilized. We have previously identified provider barriers to the use of HU which included many concerns about patient compliance and concerns over toxicity. As SCD is a rare disorder, a large multistate study will be needed to test interventions to improve utilization of HU in this patient population. The design of this large trial will entail having hem/onc providers participate in a web based intervention to improve knowledge and decrease barriers to prescribing HU and then randomize their patients to an intervention to improve adherence. The primary aim of this large multicenter trial will be to demonstrate that the intervention decreases hospital and emergency room visits for adults with SCD eligible for HU. The purpose of this R34 grant is to gather data needed in order to do the larger study. With this grant we well characterize the patients seen by community hematologist/oncologists (Aim1), refine and test (Aim 2) a behavioral intervention designed to reduce the informational and attitudinal factors which contribute to hematologists/oncologists reluctance to prescribe HU to SCD patients and finally assess the feasibility (Aim 3) of training clinic staff to provide problem solving to patients to improve adherence to HU. Based on data from our previous studies on provider identified barriers to HU our central hypothesis is that lack of knowledge by hematologists/oncologists regarding the management of HU, as well a lack of appropriate tools to overcome barriers to its use, significantly contribute to the underutilization of HU.