The Purpose:
The purpose on the Johns Hopkins Sickle Cell Disease (SCD) Infusion Clinic Toolkit is to build the capacity to expand access to Infusion Clinics (ICs) and improve care. Through the identification of barriers and facilitators, we have identified mitigating strategies and developed this infusion clinic toolkit aimed at providers, clinical staff, hospital administration, and community stakeholders (including people living with SCD) to support the infusion clinic model.
Providers
Are you a provider looking for tools to improve the care of people living with SCD? Click on the picture to learn more!
Community
Connecting with the SCD community is a vital component of building an infusion clinic. Click above for helpful tools more!
Clinics
Focused clinical care is pivotal for people living with SCD. Click above to see valuable tools!
Institution
Partnering with your institution to bring your infusion center to fruition is a great first step. Consider utilizing these tools to facilitate the discussion! Click above!
* Please note: Your infusion clinic documents, procedures and policies will be based on the resources, staffing and your institutional operations. The infusion clinic documents, procedures and policy samples are meant to be used as a guide when planning your own infusion center operations.
Thank you!
What is Sickle Cell Disease?
Sickle cell disease (SCD) is a genetic disorder of the of the blood that affects the red blood cell. This inheritable mutation of the red blood cell leads to a crescent or “sickle” shaped cell. This causes acute and chronic pain and leads to severe morbidity and early mortality affecting about 100,000 individuals in the United States, primarily African-Americans. The best-known burden of SCD is the vaso-occlusive crisis (VOC). These acute painful events are the leading cause of hospital and emergency department (ED) utilization. The good news is infusion clinics (IC) have been shown to improve outcomes in the management of patients with uncomplicated VOC when compared to ED management.
Why is an Infusion Clinic care model important for SCD?
Studies show that people with SCD and healthcare providers are dissatisfied with the quality of SCD pain management in the ED. Emergency Department care for people living with SCD is marked by long delays, lack of efficacy, and conflict. Nationally, 40% of ED visits for SCD pain result in a hospital admission. Further, individuals with SCD report not having enough involvement in decisions about their own care and that providers do not demonstrate respect, trust, and compassion. Additionally, research shows that providers are strongly predisposed to suspect addiction in SCD individuals presenting for acute pain management. The good news is that infusion clinics (IC) are proven alternatives to ED’s for the management of acute pain.
What are the goals of the infusion clinic toolkit?
- To support clinical providers and clinical staff in managing the care of people living with SCD
- To support institutional conversation and data gathering on people living with SCD and their interaction with health systems
- To support community business organizations and their role in supporting people living with SCD and assisting in establishing IC’s
- To support every person living with SCD in the United States in improving clinical care and quality of life