Pediatric sickle cell outpatient pain management: A quality improvement initiative

Abstract Background: Primary Children's Hospital (PCH) is a 289-bed tertiary care children's teaching hospital in Utah, caring for approximately 50 patients with sickle cell disease (SCD). Pediatric patients with SCD report frequent experiences of pain yet face barriers to equitable care and adequate pain management. Formal, individualized pain plans have been shown to reduce time to treatment, improve quality of care, and decrease hospital length of stay; they are a promising tool to improve health equity and reduce patient suffering. This quality improvement project aims to improve individualized pain management and caregiver confidence in managing patients with SCD at a single academic hospital, through the implementation of guideline-driven pain plans. Objective: Our objective was to employ the Plan-Do-Study-Act (PDSA) quality improvement (QI) methodology to: 1. Create individualized vaso-occlusive (VOC) pain plans for all patients with SCD; 2. Increase calls to clinic to obtain recommendations for pain management by 10% from baseline; 3. Decrease visits to the emergency department (ED) for pain management by 10% from baseline. Methods: An interdisciplinary team of palliative care and hematology providers were assembled to develop national guideline-driven, individualized, comprehensive home pain plans for all patients with SCD at Primary Children's Hospital. We surveyed hematology team members to determine reasons for increased ED utilization for pain episodes, and decreased calls to clinic and visits to the ED to manage pain episodes. A Pareto chart and fishbone diagram of these data identified two key barriers: 1. Lack of individualized home pain plans; and 2. Caregiver awareness of home plan implementation. PDSA Cycle 1 was the implementation of an individualized pain management plan at home. Baseline data was collected on the frequency of calls to the clinic for pain management and ED visits for pain management for each patient over two years before pain plan implementation. PDSA Cycle 2 was a reminder phone call to caregivers of patients who had individualized home pain plans. During the phone call, inquiries were also made about medication requirements and the utility of using the pain plan at home. The outcome measures for PDSA Cycles 1 and 2 were mean calls to clinic per month and mean visits to PCH ED for pain management. QI Macros (KnowWare International) was used for statistical analysis. This work was done under the auspices of the American Society of Hematology's Quality Improvement Training Institute. Results: Between December 2022 and July 2025, the percentage of SCD patients at PCH with individualized pain management plans increased from 0% to 94% (n=46). Using Special Processing Control charts, the mean baseline rate for calls to the clinic was 0.8 per month. After PDSA 1, this remained at 0.8 per month, and after PDSA 2, this increased to 2.7 per month. The baseline rate for ER visits was 2.1 per month. After PDSA cycle 1, the rate decreased to 1.5 per month, and after PDSA cycle 2, the rate decreased to 1.4 per month. 67% of caregivers (n=26) were successfully contacted and surveyed about their awareness and utilization of their child's pain plan during PDSA 2. 62% (n=16) of caregivers surveyed reported they had their child's pain plan, while 38% did not recall an individualized plan. Of those who had experienced pain since their last clinic visit, 63% reported using the pain plan to guide management and found it helpful. Conclusions: Using an interdisciplinary approach and a standard process during routine visits and at hospital discharge, we implemented VOC pain plans in 94% of patients with SCD at our pediatric hospital. An extensive pain plan discussion during clinic visits followed by reminder calls improved our mean calls to the clinic from 0.8 per month to 2.7 per month. Similarly, ED visits decreased from 2.1 per month to 1.4 per month. When used by caregivers, individualized pain plans helped guide patients and caregivers to manage their pain at home. Managing pain at home has the potential to reduce calls to the clinic for guidance, reduce visits to the clinic or ED for pain management, and potentially decrease hospital admissions for patients with SCD. Future expansion of this quality initiative will include implementation of ED pain plans, translation of pain plans into different languages, and incorporation of pain call logs to better capture the nature of each pain episode consistently.

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