Increasing the proportion, accessibility, and quality of individualized pain plans for adults with sickle cell disease

Abstract Introduction: Sickle cell disease (SCD) is characterized by recurrent episodes of severe pain, often necessitating treatment in acute care settings. Guidelines developed by the American Society of Hematology (ASH) for the management of pain suggest individualized opioid dosing based on patient's baseline opioid use and previously effective regimens in acute care settings. These individualized pain plans (IPPs), usually developed by hematologists or sickle cell programs, are designed to guide pain management across infusion centers, emergency departments, and during hospitalizations. We describe a successful quality improvement (QI) initiative to increase the proportion of adults with readily accessible IPPs and the quality and consistency of the plans. Methods: We developed a multidisciplinary QI team that included sickle cell clinic and sickle cell day hospital nurses, two sickle cell nurse practitioners (NPs), a clinical research coordinator, and a sickle cell physician. The team set a goal of achieving ≥80% adherence to three predefined process measures by May 1, 2024. The full team met bimonthly, with interim monthly meetings between the physician and research coordinator. The three process measures were the proportion of patients with an IPP documented in the care coordination note, the proportion of patients with an IPP included at the end of their last clinic note, and the proportion of patients with an IPP updated in the last 12 months. To monitor progress, the research coordinator or physician reviewed a random sample of 2-3 patients per provider each month (11 to 15 per month). We collected baseline data from July to September 2023, and post-intervention data from November 2023 to June 2025. We averaged results over three-month intervals to reduce variability. Results: For the baseline period, 46% of adults with SCD had an IPP documented in the care coordination note, 31% had an IPP included in the last clinic note, and 25% had an IPP updated in the last 12 months. Half of the existing IPPs were incomplete, and 18% showed inconsistencies between the plan in the care coordination and clinic notes. On October 31 2023, we launched our initial intervention, which consisted of the development of Epic Smart Phrases for opiate tolerant and opiate naïve IPPs, accompanied by an email to the 4 physicians and 4 NPs treating outpatients with SCD to introduce the QI project and the two Smart Phrases. In the first three months post-intervention (November 2023 to January 2024), the proportion of patients with IPPs in the care coordination note increased to 54%, in the clinic note to 37%, and updated within 12 months to 31%. A follow-up reminder email was sent in February 2024 to the outpatient providers, and nurses began directly notifying individual providers of patients seen in clinic without plans. This led to further improvements in the following three months (February to April 2024), with the proportion of patients with IPPs in the care coordination note increasing to 80%, in the clinic note to 63%, and updated within 12 months to 77%. We had similar results for May to July 2024 (85%, 64%, and 79%) and then a gradual decline in August to October 2024 (82%, 55%, 68%), November to January 2025 (76%, 49%, 57%), and February to June 2025 (74%, 70%, 62%). We identified certain groups including patients referred for transformative therapies or second opinions were less likely to have completed IPPs throughout the intervention period. Conclusions: We successfully implemented a QI program that increased the proportion of adults with IPPs from a baseline of 46% to 80% and improved the accessibility of the plans to external providers (available in the clinic note through Epic Care Everywhere) from 31% to 63%. We also improved the timeliness of IPPs (proportion updated in the last 12 month) from 25% to 77%. These improvements were partially maintained over the next 14 months. To enhance long-term implementation, we plan additional interventions (provider-specific performance feedback, targeted identification of patients without IPPs, and guidelines for second opinion and transformative therapy evaluations) to maintain and improve the provision and quality of IPPs for adults with sickle cell disease. Once we reliably provide high quality IPPs, our next focus will be ensuring patient access through the electronic patient portal. This will permit patients to share verifiable IPPs with acute care providers as needed.