Improvement in sickle cell disease care metrics: Regular scheduled hematology provider visits and transcranial doppler completion rate – a QI initiative at Phoenix Children's hospital

Abstract Sickle cell disease (SCD) is a multisystem hematological disorder affecting an estimated 7.74 million people world-wide and is associated with life-limiting complications. Comprehensive, multi-disciplinary follow-up is central to the management of SCD and facilitates screening for disease complications such as stroke, nephropathy, retinopathy, and iron overload . The Stroke Prevention Trial in Sickle Cell Anemia (STOP) guidelines recommend annual screening for stroke risk using transcranial Doppler (TCD) Ultrasound for all patients with SCD between 2-16 years of age. Timely initiation of chronic transfusion therapy for those at-risk prevents 90% of stroke occurrences. Furthermore, patients with SCD are more likely to be lost to follow-up due to disease related or socio-economic and systemic barriers, with rates as high as 35%. Regular outpatient follow-ups allow for discussions regarding disease-modifying therapies such as hydroxyurea, penicillin prophylaxis, and immunizations. Preventive interventions improve survival and decrease long-term morbidity for patients with SCD. Currently ~260 pediatric and adolescent SCD patients are established at Phoenix Children's Hospital. We aim to improve care for this population by decreasing lost-to-follow-up rates and improving adherence with annual TCD screening guidelines. These measures were selected based on expected impact on quality of care and outcomes, the feasibility of collecting data in the existing electronic medical record (EMR), and our ability to design interventions for improvement utilizing available institutional resources. Methods: A SCD information technology (IT) dashboard was utilized to extract and display data from our hospital's EMR. We validated this information through manual chart review. We excluded patients that have relocated, transitioned, or transferred to other facilities. Regular meetings with designated IT resources facilitated accurate data capture and validation. Data was tracked on the dashboard with a snapshot each month. We generated lists of patients with no appointment in the last 180 days and patients with no completed TCD in the last 365 days. Interventions to improve metrics included entering orders for physician follow-up and/or for TCD into the EMR to prompt scheduling teams to set up appropriate appointments. Follow-up emails were sent to radiology and hematology schedulers if visits weren't scheduled. When possible, appointments with the hematologist and TCDs were scheduled on the same day to improve adherence. Results: At baseline, the percentage of patients with scheduled appointments within 180 days was 73%. This improved to 80%three months post interventions. The baseline percentage of patients with TCD's completed within one year was 71%. This increased to 80% three months post-intervention. Additionally, the balancing measure of number of completed SCD appointments increased from 80% at baseline to 88%.Discussion: Our efforts have yielded modest success in all quality metrics. Recent analysis across various studies in the United States demonstrate ~40-50% of pediatric patients with SCD have up to date TCDs and 60% of them receive regular follow-up. While our institutions baseline data was better than national averages, we sought to improve further. Our interventions are simple, feasible, and easy to replicate if an IT dashboard is created. However, availability of adequately trained personnel is essential. The balancing measure was introduced to monitor no-show visits, aiming to thoughtfully align scheduling practices with both patient needs as well as provider availability, while ensuring that care remains accessible and efficient for all patients. We saw an improvement in this metric likely due to more frequent contact with the patients' families. Barriers that reach beyond provider availability include patient's and family's ability and willingness to participate in recommendations which includes scheduling and attending appointmentsIn the next phase of our study, we aim to emphasize the importance of regular follow-ups to our patients' families through text send-outs and phone voicemails. Efforts to extend metrics to other areas of SCD care, including obtaining and documenting RBC molecular phenotyping and improving hydroxyurea adherence are also ongoing.