This session will explore how pain is a defining and often unpredictable aspect of sickle cell disease (SCD). Prior to this initiative, patients and families reported inconsistent pain management approaches, uncertainty about medication use, and lack of clarity regarding when to escalate care or seek Emergency Department (ED) evaluation. These gaps contributed to delayed pain control, frustration, and potentially avoidable hospital utilization. A standardized, patient-centered approach was needed to promote consistency, improve health literacy, and empower families to manage pain safely and confidently The objective of this project was to standardize sickle cell pain management through the implementation of a visual, color-coded pain care plan that supports patient and family ownership of care decisions. Developed through a co-design process with patients, families, nurses, and hematologists, the tool balances evidence-based guidance with accessibility and ease of use. The care plan is organized into four color-coded zones. The Green Zone addresses mild pain with hydration, rest, and over-the-counter medications. The Yellow Zone supports moderate pain by building on green-zone strategies and adding prescribed breakthrough medications and an anti-constipation regimen. The Red Zone guides management of severe pain and clearly outlines when escalation to the ED is indicated if pain remains unresolved. The Blue Zone focuses on preventative strategies that promote daily well-being and reduce pain crises. Each non-blue zone includes tailored interventions, medication education, potential side effects, and guidance on when to contact a provider or seek hospital care. Implementation occurs prior to discharge, when a Patient and Family Navigator reviews the care plan in detail with the patient and family. Together, they personalize the plan by identifying effective medications and non-pharmacologic strategies for each zone, transforming the tool into a practical, individualized resource. Early outcomes demonstrate improved consistency in pain management, increased patient and family confidence, and more informed decision-making before seeking emergency care. Preliminary observations suggest strengthened family engagement and a potential reduction in ED utilization. Future directions include expanded adoption, electronic integration, and formal outcome tracking to support broader dissemination of this model.
This contains 3 sections:
- Video Presentation
- Reflection Questions
- Post-Session Evaluation