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

镰状细胞病：了解成人护理障碍的第一步

• 批准号: 8012258
• 负责人: SOPHIE M LANZKRON
• 金额: $ 14.01万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-03-01 至 2013-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8012258
• 关键词: Accounting; Address; Adherence; Admission activity; Adult; Adverse effects; Affect; Agreement; Applications Grants; Attitude; Award; Awareness; Behavior; Behavioral Research; Belief; Caregivers; Caring; Chronic; Chronic Disease; Clinical; Clinical Research; Cost Savings; Data; Databases; Development; Disease; Educational Intervention; Effectiveness; Employee Strikes; Environmental Risk Factor; Epidemiology; Expectancy; FDA approved; Familiarity; Focus Groups; Frequencies; Funding; Goals; Guidelines; Health Knowledge, Attitudes, Practice; Hematologist; Hematology; Hemoglobin SS; Hospitalization; Hospitals; Individual; Instruction; Intervention; Investigation; Knowledge; Lead; Learning; Longevity; Maryland; Medicaid; Medical; Mentors; Mentorship; Methods; Modality; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Outcome; Patient Care; Patients; Pharmaceutical Preparations; Pharmacy facility; Physicians; Pilot Projects; Play; Population; Preparation; Primary Care Physician; Principal Investigator; Provider; Publications; Publishing; Quality of Care; Quality of life; Reading; Recommendation; Reporting; Research; Research Personnel; Respondent; Role; Series; Sickle Cell; Sickle Cell Anemia; Specialist; Supervision; Surveys; Symptoms; System; Transfusion; Uncertainty; Urban Hospitals; Work; acute chest syndrome; base; clinical practice; compliance behavior; cost; drug addict; effective intervention; experience; health care delivery; hospital utilization; hydroxyurea; improved; interest; meetings; patient oriented; patient population; prevent; programs; prospective; randomized trial; sickling; success

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.

描述（由申请人提供）： Lanzkron 博士正在寻求这一以患者为导向的指导奖，以开始研究治疗镰状细胞病成人患者的障碍。这项研究将检查羟基脲 (HU) 在镰状细胞病 (SCD) 成人患者中的使用情况，并试图找出在该患者群体中使用 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、指导和说教指导将有助于 Lanzkron 博士成为一名独立研究者。目前还没有任何研究从患者的角度观察成人镰状细胞群体对治疗的依从性。初步数据显示，自 FDA 批准 HU 以来，马里兰州 (MD) 成人 SCO 的住院率和护理费用显着增加。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 病患者没有服用 HU。 JHH 患者不服用 HU 的原因各不相同，有必要进一步检查住院患者以外的 HU 使用情况。本拨款申请的假设是 HU 在患有 SCO 的成人中未得到充分利用。我们假设提供者和患者因素均导致 HU 的利用不足。初步数据表明，许多符合资格的马里兰州医疗补助患者并未使用 HU，并且当符合资格的患者开了 HU 处方后，他们也没有定期补充药物。该奖项计划的研究将继续检查医疗补助数据库，以了解如何向医学博士患者提供护理，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 HU 使用的担忧，对依从性的前瞻性检查将触及问题的核心。患者焦点小组将用于解决与使用 HU 相关的信念，并向医生发送调查问卷，以评估他们对 HU 的了解以及他们对 HU 处方的担忧。 Lanzkron 博士建立了镰状细胞中心，为患者提供优质护理。现在，她正努力通过获得 MSH 学位并研究与照顾患者的障碍相关的问题，成为一名熟练的调查员。她选择了行为研究、流行病学和镰状细胞病领域的导师，为她提供必要的监督，使她成为一名成功的独立调查员。