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

描述(由申请人提供)： 兰兹克伦博士正在寻求这个以患者为导向的指导性奖项，以开始检查成人镰状细胞疾病患者的护理障碍。这项研究将检查患有镰状细胞病(SCD)的成年人对羟基尿素(HU)的利用，并试图确定在这一患者群体中使用HU的一些障碍。这些研究将改善对患有镰状细胞疾病的个人的卫生保健服务。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员。在成人镰状细胞群体中，还没有从患者的角度来观察坚持治疗的任何研究。初步数据显示，自FDA批准HU以来，马里兰州(MD)的住院率和成人SCO患者的护理费用大幅增加。此外，约翰霍普金斯医院(JHH)的经验是，符合条件的血红蛋白SS病患者中有72%没有服用HU。JHH患者不服用HU的原因各有不同，有必要在住院患者之外进一步检查HU的利用情况。这项赠款申请的假设是，HU在患有SCO的成年人中未得到充分利用。我们假设，提供者和患者因素都导致了HU的未充分利用。初步数据表明，MD中许多符合医疗补助条件的患者没有使用HU，当符合条件的患者开了HU后，他们不会定期续药。该奖项中计划的研究将继续检查医疗补助数据库，以查看如何向MD患者提供护理，并将评估药房重新填充数据，以查看对HU的遵守情况。对依从性的前瞻性检查将触及问题的核心，通过使用HU解决医生和患者的担忧。将利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的了解以及他们对开HU的担忧。兰兹克伦博士建立了一个镰刀细胞中心，为患者提供高质量的护理。现在，她正在努力成为一名熟练的调查员，获得MSH学位，并研究与护理她的患者的障碍相关的问题。她挑选了行为研究、流行病学和镰刀细胞方面的导师，这些导师提供了必要的监督，使她成为一名成功的独立调查员。

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.