Using Quality Improvement Methods to Implement an Electronic Medical Record (EMR) Supported Individualized Home Pain Management Plan for Children with Sickle Cell Disease

Sickle cell disease (SCD) is one of the most common genetic disorders in the United States, affecting approximately 1 in 400-500 African-American infants each year[1]. The genetic mutation that causes SCD results in the production of an abnormal hemoglobin molecule (HbS) in the red blood cells (RBC). Under low oxygen conditions, the HbS polymerizes and causes the RBCs to elongate into a sickle form (crescent shape) and decreases the life span of the RBC. Additionally, RBCs with HbS are more “sticky”, adhering to vessel walls and limiting blood flow and oxygen delivery to many tissues and organs in the body. The resultant tissue ischemia causes progressive organ injury as well as episodes of pain (vaso-occlusive crisis). Problem/Issue SCD pain episodes are quite unpredictable and recurrent and are the hallmark of this disease. They account for the majority of Emergency Department (ED) visits as well as hospitalizations. High quality outpatient care can reduce acute care and ED visits and decrease hospitalization rates in patients with SCD [2]. Additionally, ensuring that patients have a home pain management plan and understand how to assess and reassess their pain may improve health outcomes for the patient[3]. Data from our own population of children with SCD indicate that 40-50% of ED visits in 2011 were for uncomplicated pain episodes (no concomitant medical issues such as fever, increased respiratory rate, wheezing, worsening pallor). If these pain episodes had been effectively managed at home, the ED visits might have been avoided. Intention/Objectives In an effort to reduce these potentially preventable ED visits and subsequent hospitalizations, the Comprehensive Sickle Cell Center at Cincinnati Children’s Hospital Medical Center (CCHMC) assembled a quality improvement (QI) team to partner with patients and their families to develop an individualized home pain management plan (HPMP) that incorporated both pharmacologic and non-pharmacologic pain management strategies. We also sought to identify and remove barriers to the successful use of an HPMP, such as not having enough analgesics at home or not allowing enough time for analgesics to work before presenting to the ED. We ensured that medications were refilled. Finally, we documented the plan in a standard location and format in the electronic medical record (EMR) making it available to all CCHMC heath care providers. Ultimately, we hoped that this intervention would improve the management of pain at home and reduce the need for ED visits for uncomplicated pain and any resulting hospitalizations. This paper describes the development, refinement and testing of an individualized HPMP protocol and related outcomes.