Project Summary

Background: Sickle cell disease (SCD) is a genetic disorder of the blood that leads to severe morbidity and early mortality. The most common complication of the disease is vaso-occlusive crisis (VOC). The emergency department (ED) has been the standard location where patients with SCD go to seek care for the treatment of VOC. Numerous studies show that patients and healthcare providers are dissatisfied with the quality of SCD pain management in the emergency department.

Proposed Solution to the Problem: A strong body of literature supports the assertion that a subspecialty infusion center (IC), staffed by expert clinicians and delivering individualized care, can improve care quality for the management of acute pain (VOC) in people with SCD while reducing costs.

Objectives for this project include:

  • Identify facilitators and barriers to implementing the infusion clinic model.
  • Create a network of providers that are engaged in the infusion clinic model to serve the needs of their patients.
  • Develop and evaluate an implementation toolkit for the opening of infusion clinics. The long-term goal is to expand access to the infusion clinic model and improve outcomes in the treatment of VOC.

Activities: In order to understand the facilitators and barriers to implementation of infusion clinics broadly, the project team will interview a diverse group of stakeholders. Through these interviews, the team will develop an implementation strategy. The team will create a learning collaborative that will help those who have established infusion clinics share and learn about best practices. In addition, the collaborative will provide an opportunity for those in the planning phases of starting an infusion clinic. The infusion clinic learning collaborative will use Project ECHO (Extension for Community Healthcare Outcomes), a model the team has successfully used to improve the delivery of high-quality sickle cell care in both the inpatient and outpatient settings. Finally, using the information gained from identifying barriers and facilitators, the team will develop and test an implementation toolkit.

Outcomes and Outputs (projected):

  • Identify barriers and facilitators of implementing the infusion clinic across the United States.
  • Design an implementation strategy that will allow the team to overcome the identified barriers.
  • Create a learning collaborative made up of a cohesive group of diverse stakeholders that will provide capacity to expand the infusion clinic model.
  • Develop a usable, feasible, and acceptable implementation toolkit informed by stakeholders.

Patient and Stakeholder Engagement Plan: There will be extensive involvement of patients and other key stakeholders in this project. Stakeholders will be interviewed to inform the development of an implementation strategy. Stakeholders will include people living with SCD, hospital administrators, insurers, physicians, advanced practice providers, nurses, social workers, community health workers, and community-based organizations. Stakeholders will also have a role in the iterative process planned to develop the implementation toolkit and to ensure that it is usable.

Project Collaborators: The team will have representatives from a number of community-based organizations and federal partners involved in this project. The team is also collaborating with the sickle cell clinic at ChristianaCare in Delaware, which will implement the toolkit in a real-world setting.

Journal Citations

Project Information

Sophie Lanzkron, MD, MHS
Johns Hopkins School of Medicine

Key Dates

33 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: February 2, 2023