Bridging the Gap in Emergency Care for Sickle Cell Disease (SCD): A Call for Quality Measures and Collaborative Solutions

Abstract

Historically, sickle cell disease (SCD) was regarded as a pediatric illness. With the implementation of newborn screening, penicillin prophylaxis, advances in pediatric care, and disease modifying therapies, including hydroxyurea and transfusion, the majority of individuals with SCD now survive to adulthood. This shift has created unique challenges for accessing acute care within an adult healthcare system.

Interactions between adults with SCD and emergency medicine teams is fraught by complex challenges due to the systemic issues inherent to adult care delivery. Most adult patients with SCD interact with the health care system when they have acute pain episodes. Timeliness to administration of pain relief–a cornerstone of acute SCD management–remains a persistent challenge for many overwhelmed emergency departments, leading to poor adherence to established guidelines. These difficulties have been further compounded by the ongoing opioid epidemic and high healthcare utilization by some individuals, which have contributed to the strained provider-patient relationships. Patients with SCD have no higher rates of addiction than the general public but have been disproportionately affected by opioid-restrictive policies implemented in response to the opioid epidemic.

We explore how implementation of evidence-based quality care guidelines for acute management, coupled with structured evaluation of high utilization patients through a comprehensive model addressing their complex medical, behavioral health and social needs, may provide a pathway to bridge existing gaps and in time, improve long term outcomes.