Sickle Cell Disease: First steps toward understanding barriers to care for adults

描述（由申请人提供）： 博士Lanzkron正在寻求这一指导患者导向奖，以开始检查治疗镰状细胞病成人的障碍。本研究将检查患有镰状细胞病（SCD）的成人中的羟基脲（HU）利用率，并试图确定在该患者人群中使用HU的一些障碍。这些研究将改善镰状细胞病患者的医疗保健服务。通过这笔资金获得的研究，指导和教学指导将有助于Lanzkron博士成为一名独立的研究人员。目前还没有任何研究从患者的角度来观察成人镰状细胞患者的治疗依从性。初步数据显示，自从FDA批准HU以来，马里兰州（MD）的SCO成人住院率和护理费用显著增加。此外，约翰霍普金斯医院（JHH）的经验是，72%符合条件的血红蛋白SS疾病患者未服用HU。JHH患者不服用HU的原因各不相同，因此有必要对住院患者以外的HU利用情况进行进一步检查。这项资助申请的假设是，HU在患有SCO的成年人中未得到充分利用。我们假设，供应商和患者的因素导致了HU的利用不足。初步数据表明，许多符合条件的患者在医疗补助在MD不使用胡，当符合条件的患者已规定胡，他们没有得到定期补充。该奖项计划的研究将继续检查医疗补助数据库，以了解如何向MD患者提供护理，并将评估药房补充数据，以了解对HU的依从性。通过解决医生和患者对使用HU的担忧，对依从性的前瞻性检查将触及问题的核心。将使用患者焦点小组来解决与使用HU有关的信念，并将向医生发送调查问卷，以评估他们对HU的了解及其对处方HU的担忧。Lanzkron博士建立了一个镰状细胞中心，为患者提供优质护理。现在，她正在努力成为一个熟练的调查员，通过获得MSH学位和检查有关的问题，以照顾她的病人的障碍。她选择了行为研究，流行病学和镰状细胞提供必要的监督，使她成为一个成功的独立调查员导师。

DESCRIPTION (provided by applicant): Dr. Lanzkron is seeking this Mentored Patient-Oriented Award to start to examine the barriers to care for adults with sickle cell disease. This research will examine Hydroxyurea (HU) utilization in adults with sickle cell disease (SCD)as well as try to identify some of the barriers to the use of HU in this patient population. These studies will lead to improved health care delivery to individuals with sickle cell disease. The research, mentorship and didatic instruction that is received through this funding, will contribute to Dr. Lanzkron becoming an independent investigator. There has not been any research done looking at adherence to therapy from a patient perspective in the adult sickle cell population. Preliminary data shows that hospitalization rates and the cost of caring for adults with SCO in Maryland (MD) has increased significantly since FDA approval of HU. Furthermore the experience at Johns Hopkins Hospital (JHH) is that 72% of eligible patients with hemoglobin SS disease are not taking HU. The reasons that patients at JHH do not take HU vary and a further examination of HU utilization beyond that of hospitaized patients is warranted. The hypothesis of this grant application is that HU is underutilized in adults with SCO. We hypothesize that both provider and patient factors lead to the underutilization of HU. Preliminary data suggests that many eligible patients on Medicaid in MD are not using HU and when eligible patients have been prescribed HU they are not getting it refilled regularly. The research planned in this award will continue the examination of Medicaid databases to look at how care is delivered to patients in MD and will evaluate pharmacy refill data to look at adherence to HU. A prospective examination of adherence will go to the core of the issue, by addressing both physician and patient concerns with the use of HU. Patient focus groups will be used to address beliefs pertaining to the use of HU and surveys will be sent to physicians to assess their knowledge of HU and their concerns with prescribing HU. Dr. Lanzkron has established a Sickle Cell Center to provide qualtiy care for patients. Now she is working toward becoming a skilled investigator by obtaining an MSH degree and examining issues related to the barriers to care for her patients. She has selected mentors in behavioral research, epidemiology and sickle cell that provide the necessary supervision to make her a successful independent investigator.