Innovative Model for Creation and Use of Co-Developed Pain Management Plans for Patients with Sickle Cell Disease
Authors: Thompson Alexis , Umana Jasmine , Sabrick Julia B , McKnight Therese , Williams Leslie D , Rana Krupal , Baar William , Coogle Lauren , Mecado Osvaldo , Witmer Char M , Ellison Angela M. , Norris Cynthia F 
Published: December 2024

Background: Sickle cell disease (SCD) is an inherited blood disorder characterized by chronic hemolytic anemia, severe debilitating pain, and health disparities. The ASH Research Collaborative launched a SCD Learning Community (LC) to aid in the improvement of clinical practice and patient outcomes, and designated improving the reliable use of co-developed pain plans as a priority for LC pilot sites. Pain management plans can provide individuals with SCD and their medical team with guidance to enable timely interventions to relieve suffering more quickly and potentially decrease emergency department (ED) visits and admissions. At the outset of this initiative as an LC pilot site, 0% of SCD patients at our institution had formal pain management plans. Clinical pathways to guide ED care were not individualized and focused on opioid management. Patients and families expressed strong interest in integrative health (IH) and nonpharmacologic approaches to pain management. Therefore, we postulated that co-development of pain plans would empower individuals with SCD to be more engaged in treatment decisions with greater patient and family satisfaction.
Objectives: Aim 1 was to increase the number of patients aged 2-20 years with severe genotypes (HbSS/Sß0Thalassemia), inclusive of payor or socioeconomic status, who have co-developed pain management plans from 0% to 70% by 10/30/2023 (pilot phase). Aim 2 was to expand use of an electronic health record (EHR)-based co-developed pain plan across all providers and all genotypes for at least 50% of the population by 6/30/2024.
Methods: A multidisciplinary collaboration, including quality improvement (QI), hematology, ED and IH staff, created a key driver diagram, process map and pain plan template with real-time provider and patient feedback. Materials from other LC pilot sites and relevant institutional QI initiatives were reviewed. Using the Epic EHR and Healthy Planet population health platform (Epic Systems Corporation; Verona, WI), eligible patients for the pilot phase were identified, filtering for age, SCD genotype, and ≥1 narcotic prescription for pain in the past year. Pain plans were completed initially on paper during routine outpatient visits, refined based on feedback and translated into an electronic smart form and patient-facing pain plan accessible in MyChart. A 3-item REDCap survey was completed by caregivers to assess engagement and satisfaction with the plan. The Child Opportunity Index (COI), a composite measure of economic, educational, health and safety factors in neighborhoods, and payor status were evaluated to assess equity and inclusion in this initiative.
Results: ~950 children and young adults with SCD receive care at this urban, academic medical center. The state-normed COI was Very Low to Low for 74% of patients in the active SCD cohort within our Healthy Planet registry. About 70% have a governmental primary medical payor; 88% self-identify as non-Hispanic Black; and 97% indicate English as their preferred language. 46 patients met pilot phase eligibility criteria. 35 pain plans (76.1%) were completed by 10/30/2023. 35 feedback surveys (100%) were completed and demonstrated high engagement and satisfaction among SCD families. 92% of respondents felt the pain plan was co-developed and 89% said they were very likely to use it. Epic-based pain plans covering outpatient and ED management were integrated into clinical workflows. QR codes for IH informational videos for non-pharmacologic approaches to wellness and pain management were added to the after-visit summary. As of 07/25/2024, 372 patients (50% of target population) have pain plans. Their individualized preferences are now automatically displayed for prescribing providers when the ED SCD pain orderset is accessed. There were no differences in COI, payor status, or race/ethnicity between those who do or do not have pain plans.
Conclusion: Co-developed pain management plans should facilitate more effective SCD treatment and improve the patient/family experience using an approach that is feasible, sustainable, and scalable. Creation of pain plans for more SCD patients is ongoing. Current priorities include completion of an inpatient component and development of a QI-metric dashboard to track pain plan use and impact of pain plans on acute care utilization. Planned outcome measures include ED use, time to first opioid in ED, and hospital admission rates.