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Comparing patient-centered outcomes in the management of pain between emergency departments and dedicated acute care facilities for adults with sickle cell disease
Investigator (PI): Lanzkron, Sophie
Performing Organization (PO): (Current): Johns Hopkins Medicine, Department of Medicine, Division of Hematology / (410) 502-6252
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2015
Final Year: 2020
Record Source/Award ID: PCORI/IHS-1403-11888
Funding: Total Award Amount: $4,358,545
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Sickle cell disease (SCD) is a disorder that leads to severe morbidity and mortality. One hundred thousand individuals in the U.S. are affected. The most common burden of SCD is the vaso-occlusive crisis (VOC). These acute, painful events are the leading cause of hospital utilization. Studies show that patients and health care providers are dissatisfied with the quality of SCD pain management. Emergency department (ED) care for SCD is marked by long delays and lack of efficacy. SCD patients report not having enough involvement in decisions about their own care, and that providers do not demonstrate respect, trust, and compassion. There is clearly basis for this belief, as studies have shown that providers hold highly negative attitudes toward SCD patients and are predisposed to suspect addiction in patients with SCD. Interventions to improve care in the ED have been studied but have not resulted in improved patient satisfaction. Infusion centers (IC) are alternatives to ED care that provide rapid pain control and frequent reassessments. Several investigators have published on the benefits of a day hospital/infusion center model. These benefits include more rapid pain relief, a reduction in hospital admissions and a decrease in 30-day readmissions. The objectives of this study are to compare patient-centered outcomes between ED and IC settings. We will enroll 500 people with SCD that are seen in the participating centers into a prospective cohort. To make our results as generalizable as possible we will enroll participants from 4 sites (Baltimore, Cleveland, Milwaukee, and Baton Rouge). When any participant is treated in either an ED or IC, data on clinical outcomes and patient experiences of care will be collected. The primary outcome of this study is to compare the time it takes to be treated for pain between the ED and the infusion center model. We are going to measure this by looking at time from triage to first dose of parenteral pain medications. Several people living with SCD are participating in the design of this study or directly in the care of patients in the infusion clinics. Local community based organizations will help us enroll participants in the cohorts and have been active in the study design. Payers that have been involved in supporting the infusion clinic financially in Baltimore will provide their expertise to the other sites to help make the infusion clinics sustainable. All of these participants will meet quarterly to discuss the project and address study concerns. This project will demonstrate how the infusion clinic model vastly improves health care delivery for adults with SCD seeking out care for their pain. The data collected will be used by all of the stakeholders in the health care system to justify the opening of more infusion clinics. Expanding access to ICs will allow patients in pain to have their needs met in a rapid, knowledgeable, and compassionate fashion.
MeSH Terms:
  • Acute Disease
  • Adult
  • Anemia, Sickle Cell /psychology
  • /*therapy
  • Baltimore
  • Cohort Studies
  • Emergency Service, Hospital /*organization & administration
  • Humans
  • Infusions, Intravenous
  • Louisiana
  • Ohio
  • Patient Readmission
  • Patient Satisfaction
  • Patient-Centered Care /*organization & administration
  • Wisconsin
Country: United States
State: Maryland
Zip Code: 21287
UI: 20152249
CTgovId: NCT02411396
Project Status: Ongoing
Record History: ('2019: Project extended to 2020\n2017: Project extended to 2019',)