Improving Access to Hydroxyurea for Adults with Sickle Cell Disease

改善镰状细胞病成人患者获得羟基脲的机会

• 批准号: 8445712
• 负责人: SOPHIE M LANZKRON
• 金额: $ 35.56万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-08-05 至 2015-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8445712
• 关键词: Accident and Emergency department; Address; Adherence; Adult; Attitude; Behavior Therapy; Clinic; Clinic Visits; Code; Communities; Consensus; Counseling; Data; Disease; Goals; Grant; Health; Hematologist; Hematology; Hospitalization; Hospitals; Improve Access; Inpatients; Intervention; Knowledge; Lead; Multicenter Trials; Multimedia; Nurses; Oncologist; Online Systems; Patient Noncompliance; Patients; Pharmacologic Substance; Pharmacy facility; Physicians; Preparation; Problem Solving; Protocols documentation; Provider; Randomized; Randomized Clinical Trials; Rare Diseases; Resources; Sickle Cell Anemia; Testing; Time; Toxic effect; Training; United States National Institutes of Health; Visit; abstracting; arm; base; compliance behavior; design; experience; hydroxyurea; improved; interest; multi-component intervention; oncology; patient population; primary outcome; public health relevance; randomized trial; sickling; therapy design; tool; treatment as usual

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.

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脲的利用率。羟基脲（HU）疗法是目前唯一可用于治疗镰状细胞性贫血（SCA）成人患者的疾病缓解药物。最近的NIH共识小组审查了关于HU治疗SCD的可用证据，发现其是安全、有效和有效的（Brawley等人，2008年）。审查还发现，人道主义单位的利用率极低。我们之前已经确定了使用HU的供应商障碍，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是一种罕见疾病，因此需要进行一项大型多州研究来测试干预措施，以提高该患者人群对HU的利用率。这项大型试验的设计需要hem/onc供应商参与 在一个基于网络的干预，以提高知识和减少障碍，处方胡，然后随机他们的病人干预，以提高依从性。这项大型多中心试验的主要目的是证明干预措施减少了符合HU标准的成人SCD患者的医院和急诊室就诊次数。这项R34补助金的目的是收集进行更大规模研究所需的数据。有了这笔补助金，我们很好地描述了社区血液学家/肿瘤学家（目标1）看到的患者，完善和测试（目标2）的行为干预，旨在减少信息和态度因素，有助于血液学家/肿瘤学家不愿意处方胡SCD患者，并最终评估培训诊所工作人员的可行性（目标3），为患者提供解决问题，以提高坚持胡。根据我们之前关于供应商确定的HU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，以及缺乏克服其使用障碍的适当工具，显着导致HU利用不足。