Background: Sickle cell disease (SCD) is a disorder that leads to severe morbidity and mortality. An estimated 100,000 individuals in the United States are affected. The most common burden of SCD is the vaso-occlusive crisis. These acute, painful events are the leading cause of hospital utilization. Studies show that patients and healthcare 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 that they do not have enough involvement in decisions about their own care and that providers do not demonstrate respect, trust, and compassion. In fact, studies have shown that providers hold highly negative attitudes toward SCD patients and are predisposed to suspect addiction in these patients.
Interventions to improve care in the ED have been studied but have not resulted in improved patient satisfaction. Infusion centers (ICs) 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.
Objective: To compare patient-centered outcomes between ED and IC settings.
Methods: We will enroll 500 people with SCD seen in the participating centers into a prospective cohort. To make our results as generalizable as possible, we will enroll participants from four 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 will be a comparison between the ED and IC models in time to be treated for pain, measured from triage to first dose of parenteral pain medications.
Patient and Stakeholder Engagement: Several people living with SCD are either participating in the design of this study or working directly in the care of patients in the infusion clinics. Local community-based organizations will help us enroll participants and have been active in the study design. Payers that have provided financial support to the infusion clinic in Baltimore will provide their expertise to the other sites to help make the infusion clinics sustainable. All these participants will meet quarterly to discuss the project and address study concerns.
Anticipated Impact: This project will demonstrate how the infusion clinic model vastly improves healthcare delivery for adults with SCD seeking out care for their pain. The data collected will be used by all of the stakeholders in the healthcare 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.