From the Cincinnati Children’s Hospital Medical Center, Cincinnati, OH.
This article is the third in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.)
ABSTRACT
• Objective: To develop and implement individualized home pain management plans that included pharmacologic as well as nonpharmacologic strategies for children with sickle cell disease (SCD).
• Methods: A multidisciplinary quality improvement team developed a questionnaire to assess the frequency, location, and severity of a patient’s pain during a routine comprehensive visit in order to help the patient and family develop an effective home pain management plan. Using plan-do-study-act cycles, the team was able to build this process into the daily workflow for all SCD patients age 5 years to 21 years of age. Patients with comprehensive visits scheduled from January 2012 to May 2013 were included ( n = 188) in the intervention.
• Results: By May of 2013, 88% of eligible patients had an individualized home plan in place. There was a concomitant reduction in the percentage of SCD patients seen in the ED for uncomplicated SCD pain (6.9% vs. 1.1%).
• Conclusions: Using quality improvement methods, an individualized home pain management intervention was incorporated successfully into the daily workflow of a busy outpatient SCD clinic. This intervention has the potential to improve patient outcomes by decreasing avoidable ED visits as well as reducing overall health care costs.
Sickle cell disease (SCD) is one of the most common genetic disorders in the United States, affecting approximately 1 in 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).
Recurrent pain episodes are the hallmark of this disease, accounting for the majority of emergency department (ED) visits as well as hospitalizations. High-quality outpatient care can reduce acute care and ED visits as well as 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 outcomes [3]. Data from our population of children with SCD indicate that 40% to 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.
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 assembled a quality improvement (QI) team to partner with patients and their families to develop individualized home pain management plans (HPMP) that incorporated both pharmacologic and nonpharmacologic pain management strategies. We also sought to identify and remove barriers to the successful use of a home pain management plan, such as not having enough analgesics at home or not allowing enough time for analgesics to work before presenting to the ED. We documented the plan in a standard location and format in the electronic medical record (EMR), making it available to all medical center providers. This paper describes the development, refinement, and testing of an individualized HPMP intervention and related outcomes.