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

基本信息

批准号：
8215781
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
项目类别：
财政年份：
2008
资助国家：
美国
起止时间：
2008-03-01 至 2014-01-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8215781
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

项目摘要

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博士正在寻求这一受到指导的以患者为导向的奖项，以开始检查针对患有镰状细胞疾病的成年人的障碍。这项研究将检查患有镰状细胞疾病（SCD）的成年人的羟基脲（HU）利用，并试图确定该患者人群中使用HU的某些障碍。这些研究将导致改善镰状细胞疾病患者的医疗保健分娩。通过这项资金获得的研究，指导和做法指导将有助于Lanzkron博士成为独立的研究员。从患者的角度来看，从患者的角度来看，没有进行任何研究。初步数据表明，自FDA批准HU以来，马里兰州SCO（MD）在马里兰州（MD）的成年人的照顾率和关怀成本大大增加。此外，约翰·霍普金斯医院（JHH）的经验是，有72％的血红蛋白SS疾病患者没有接受HU。保证JHH的患者不服用HU和对HU利用率的进一步检查的原因是有必要的。该赠款申请的假设是HU在SCO的成年人中未充分利用。我们假设提供者和患者因素都导致HU的利用不足。初步数据表明，MD中许多合格的医疗补助患者没有使用HU，当有资格的患者开处方HU时，他们没有定期重新补充它。该奖项计划的研究将继续检查医疗补助数据库，以研究如何将护理提供给医学博士的患者，并将评估药学补充数据以查看遵守HU。对依从性的前瞻性检查将通过解决HU的医师和患者的担忧来解决问题的核心。患者焦点小组将用于解决与使用HU有关的信念，并将调查发送给医生，以评估他们对HU的了解以及他们对开处方HU的关注。 Lanzkron博士已经建立了一个镰状细胞中心，为患者提供了重要的护理。现在，她正在努力通过获得MSH学位并检查与护理患者的障碍有关的问题，以成为一名熟练的研究者。她选择了行为研究，流行病学和镰状细胞的导师，这些导师提供了必要的监督，以使她成为成功的独立研究者。

项目成果

期刊论文数量（16）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Symptomatic Avascular Necrosis: An Understudied Risk Factor for Acute Care Utilization by Patients with SCD.

DOI：
10.14423/smj.0000000000000512
发表时间：
2016-09
期刊：
Southern medical journal
影响因子：
1.1
作者：
Yu T;Campbell T;Ciuffetelli I;Haywood C Jr;Carroll CP;Resar L;Strouse JJ;Lanzkron S
通讯作者：
Lanzkron S

Utility of the Montreal Cognitive Assessment as a Screening Test for Neurocognitive Dysfunction in Adults with Sickle Cell Disease.

DOI：
10.14423/smj.0000000000000511
发表时间：
2016-09
期刊：
Southern medical journal
影响因子：
1.1
作者：
Cichowitz C;Carroll PC;Strouse JJ;Haywood C Jr;Lanzkron S
通讯作者：
Lanzkron S

Examination of the Patient and Hospitalization Characteristics of 30-Day SCD Readmissions.

30 天 SCD 再入院的患者和住院特征检查。

DOI：
10.14423/smj.0000000000000526
发表时间：
2016
期刊：
Southern medical journal
影响因子：
1.1
作者：
Carroll,CPatrick;HaywoodJr,Carlton;Lanzkron,SophieM
通讯作者：
Lanzkron,SophieM

Impact of a dedicated infusion clinic for acute management of adults with sickle cell pain crisis.

DOI：
10.1002/ajh.23961
发表时间：
2015-05
期刊：
AMERICAN JOURNAL OF HEMATOLOGY
影响因子：
12.8
作者：
Lanzkron, Sophie;Carroll, C. Patrick;Hill, Peter;David, Mandy;Paul, Nicklaine;Haywood, Carlton, Jr.
通讯作者：
Haywood, Carlton, Jr.