IMPACT OF THE COVID-19 PANDEMIC On January 27, 2020, the U.S. Department of Health and Human Services declared a public health emergency because of confirmed cases of 2019 Novel Coronavirus. COVID-19 caused significant disruption to health care systems throughout the U.S., and many of the SCD providers in the SCDTDRCP were engaged in either front line care or planning and developing procedures and processes, or both, to respond to evolving needs. Healthcare systems and individual providers quickly implemented new workflows and approaches to provide essential care for people living with SCD — who were at high risk for serious complications of COVID-19. Appendix B contains additional information about the impact of COVID-19 on people living with SCD and on the Program.
Healthcare Domain 1 Increase the number of providers treating individuals with SCD using the National Heart, Lung and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease Expert Panel Report
Domain 1 Highlights • Robust frequency of HU prescription: On average, 70% of the pediatric population and 58% of the adult population served by this program received an HU prescription* • Increasing recognition and use of disease-modifying agents, other than HU: On average, 14% of the pediatric population and 24.6% of the adult population served by this program received disease-modifying therapies (other than HU)* • Confirmation of the importance of immunizations and acknowledgment that the processes of immunization assessment and delivery must be improved: On average, the pediatric pneumococcal immunization rate was 82% and the adult pneumococcal immunization rate was 63.5%* • Demonstration of higher rates of TCD screening than some national findings, but recognition that efforts to increase rates should continue. The average pediatric TCD rate was 65.5%* • Identification of barriers to care, including systemic bias and racism, and planning activities to address them *Calculated as the average of each 6-month aggregate percentage from Quarter 1 2019 to Quarter 4 2020.
RCCs collected information in three clinical areas: Hydroxyurea (HU) prescribing, a disease-modifying medication effective in reducing pain crises and decreasing hospitalization and ER visits Immunization, a prophylactic therapy that prevents life-threatening infections, with specific focus on pneumococcal vaccination Transcranial Doppler (TCD) screening, a procedure that identifies children who are at higher risk for stroke Importance of Hydroxyurea Use and Other Disease-Modifying Therapies for Individuals with SCD Hydroxyurea has been shown to significantly reduce the frequency of SCD-related pain, need for blood transfusions, and common pulmonary complications, including ACS (National Heart Lung and Blood Institute, 2014). Left untreated, ACS has been shown to cause significant morbidity and is associated with a higher risk of death. HU has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of clinically severe SCD since 1998 for adults and since 2017 for children. Additional HU information and NHLBI guidelines for HU use can be found in the Recommendations. However, despite the strong NHLBI recommendation, uptake has been inconsistent and below recommended levels (Brousseau et al., 2019; Su et al., 2019). A discussion of factors that may contribute to low rates of HU is in Appendix B. The Program assessed adherence to HU use recommendations by 1) reviewing health record information to measure the number of patients given a prescription for HU (CQIM, see Table 2 and Table 3); and 2) surveying providers to determine the percentage who report prescribing HU (PSPM). Results demonstrated high, consistent support of the use of HU among participating sites and higher percentages of HU usage compared to other available data on the national experience. Every RCC provided CQIM data on HU utilization within their regions. On average, 70 percent of the pediatric population served by this program received an HU prescription and 58 percent of the adult population served by this program received an HU prescription.
6
