Advancing Nursing Care and Education for Sickle Cell Disease: A Quality Improvement Initiative

Background: The Adult Sickle Cell and Hemoglobin Disorders Program at UW Health was initiated in 2019. However, nurses and nurse leaders, including clinical nurse specialists (CNSs), nurse managers, and nursing education specialists (NESs), receive inconsistent education and training on sickle cell disease (SCD). As a result, patients with SCD often experience poorly managed pain, stigma, low quality of life, and psychological distress. A 2022 pilot project survey of 17 direct-care nurses mirrored these findings that lead to program-developed educational modules. Although educational videos were well-received, the demanding schedules of nursing staff made it challenging to sustain comprehensive SCD education for all staff. Consequently, we redesigned the nursing education and training approach, focusing on educating nurse leaders to enhance leadership support and awareness of available educational resources for nursing staff.

Methods: This initiative developed and integrated specialized SCD education and training for nurses and nurse leaders at UW Health. Initially, pre-surveys and SCD educational modules were distributed to 19 nurse leaders (CNSs, nurse managers, and NESs) across 8 units, with 5 leaders completing pre-surveys assessing their knowledge, attitudes, and comfort in managing SCD. Post-surveys were completed by 4 of these leaders after the educational modules. Additionally, leveraging CNS leadership and informatics, the project introduced two online resources for SCD: a Translating Research into Practice (TRIP) sheet and a Quick-Help Guide. The TRIP sheet was launched on the hospital's intranet as a concise, evidence-based reference sheet to help nurses manage acute SCD pain crises. Similarly, the Quick-Help Guide was developed as a comprehensive, web-based resource that reviews SCD pathophysiology, patient-specific care plans, racial bias, and policies for pain assessment and documentation. Furthermore, the project enhanced nursing staff review and access to patient-specific care plans by redesigning the best practice advisory (BPA) in the electronic health record (EHR) for SCD patients at our institution.

Results: Pre-survey results among nurse leaders reflected the attitudes and beliefs of 18 direct-care nurses surveyed in 2022, with all 5 leaders agreeing that SCD patient care could be improved. Three leaders acknowledged the existence of race-based discrimination against SCD patients in healthcare settings. Additionally, 2 leaders were initially unable to locate patient-specific care plans within the EHR. Identified barriers included lack of time, inadequate knowledge, and the presence of new nursing staff. Post-survey results indicated increased awareness of race-based discrimination and improved ability to locate patient-specific care plans. Two leaders reported enhanced knowledge of SCD and better management of nursing care following the education modules. Leaders also requested guidance on managing challenging behaviors and supported the integration of educational resources for nurses.

Conclusion: The specialized education initiative improved nursing knowledge and identification of race-based discrimination against SCD patients by focusing on nursing leadership. Ongoing discussions are necessary to address common barriers to nursing education and SCD patient care, including nurse leader and organizational readiness for change. This initiative underscored the importance of nursing knowledge, attitudes, and comfort in relation to the prioritization of SCD within the organization. Continued awareness, dissemination, and utilization of the web-based educational resources and redesigned BPA are expected to enhance patient-centered care. However, sustained efforts in nursing education, training, and organizational support are crucial for successful implementation and improved patient outcomes.

No relevant conflicts of interest to declare.