Project Summary

PCORI implementation projects promote the use of findings from PCORI-funded studies in real-world healthcare and other settings. These projects build toward broad use of evidence to inform healthcare decisions.

This PCORI-funded implementation project is supporting better pain management for patients experiencing sickle cell crises.

In sickle cell disease, or SCD, blood cells have a sickle shape. They may lodge in small blood vessels, causing sudden, severe pain. These periods of pain are called SCD crises. During an SCD crisis, patients often go the emergency department, or ED, for treatment. But EDs don’t always provide rapid care for patients with SCD. Infusion centers that specialize in SCD care are an alternative to the ED.

What is the goal of this implementation project?

A PCORI-funded research study found that patients receiving treatment for uncomplicated SCD crises had better pain management care at infusion centers than at EDs. Compared with patients treated at EDs, patients treated at infusion centers waited less time for pain medicine, were more likely to have their pain rechecked within 30 minutes, and were less likely to be admitted to the hospital. Patients were also more satisfied with their care and felt safer.

This project will use a set of resources developed through a PCORI Engagement Award to help health systems develop infusion centers to improve pain management care for patients during SCD crises.

What will this project do?

The project team is working with health systems that serve patients with SCD in nine states across the United States. Four systems have an infusion center that only treats patients with SCD. Five systems have an infusion center that serves patients with SCD and other serious health issues.

To support improved SCD care at both infusion centers and EDs in these health systems, the project is using a resource toolkit. The team developed the toolkit in partnership with stakeholders, including people with SCD, hospital administrators, clinicians like doctors and nurses, and other health professionals. The toolkit helps health systems as they shift pain treatment for patients with SCD from the ED to the infusion center. It also helps infusion centers and EDs coordinate the care they provide. The resources in the toolkit include:

  • Communication training materials and information about stigma related to SCD and how it can affect patients and their care
  • Templates for treatment plans and other materials to support SCD care
  • Information and guidance on how to identify champions who can support SCD care at infusion centers and EDs
  • Protocols and instructions to help infusion centers and EDs coordinate care, share patient treatment plans, and provide better pain management during SCD crises

At each site, the project team is also:

  • Introducing the set of resources and discussing infusion centers’ role in supporting SCD care.
  • Working with staff to select the resources that work best for their site and make them part of regular care. Staff include doctors, nurse practitioners, medical assistants, and front desk staff.
  • Collecting data from sites and developing feedback reports.
  • Providing ongoing training, coaching, and feedback through a program called Project ECHO. ECHO has weekly video training and mentoring sessions to connect SCD experts with clinicians at infusion centers and EDs.

The project team is also encouraging other health systems to use the resources to optimize pain management care for patients with SCD.

What is the expected impact of this project?

The project will demonstrate what’s required to improve SCD care at infusion centers and EDs. More than 3,500 patients will have access to quality pain management care during SCD crises.

The project’s evaluation will confirm that changes to support SCD care are working as intended to improve pain management during SCD crises.

More about this implementation project:

Stakeholders Involved in This Project

  • National Alliance for Sickle Cell Centers
  • American Society of Hematology’s Sickle Cell Disease Coalition
  • An advisory board consisting of patients, hematologists, subspecialists, nurses, office staff, members of local community-based organizations, and representatives of advocacy organizations

Implementation Strategies

  • Provide education to clinicians and staff on infusion centers and SCD care, as well as how to use an implementation toolkit.
  • Provide sites with toolkit resources to support implementation, including electronic health record templates, manuals, and infusion center policies and procedures.
  • Adapt toolkit resources to work with sites’ existing resources and workflows.
  • Provide ongoing training and implementation support through weekly ECHO sessions.
  • Provide site-specific audit and feedback reports about the quality of SCD care.
  • Identify and prepare champions.
  • Provide sites with technical assistance, including consultation and practice facilitation.
  • Offer continuing medical education credits.
  • Refine and make available an implementation toolkit to support broader implementation.

Evaluation Outcomes

To document implementation:

  • Number of patients with an acute SCD crisis visit
  • Number of infusion center clinics open at least five days a week
  • Number of open clinics and patients served after one year
  • Clinician satisfaction with toolkit resources
  • Clinician rating of toolkit strategies as feasible and acceptable

To assess healthcare and health outcomes:

  • Patient satisfaction with pain management
  • Time to first dose of pain medicine (as less than or equal to 60 minutes)
  • Healthcare utilization, including number of hospital admissions, ED visits, and infusion center visits

Project Information

Sophie Lanzkron, MD
Johns Hopkins School of Medicine
Implementing the Infusion Clinic Model in Sickle Cell Disease

Key Dates

March 2022
May 2025

Initial PCORI-Funded Research Study

This implementation project focuses on putting findings into practice from this completed PCORI-funded research study: Comparing Pain Management for Sickle Cell Disease Crises in Emergency Rooms and Infusion Centers


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Last updated: March 15, 2024