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

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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.