Background: Stroke, a feared and common complication of sickle cell anemia can be prevented by early recognition of at-risk individuals using annual screening transcranial Doppler ultrasound (TCD) and subsequent treatment with chronic transfusion therapy. The landmark STOP trial established annual screening TCD from 2 to 16 years of age as a standard of care for children with sickle cell anemia. Compliance with this recommendation remains challenging in a majority of sickle cell centers due to various reasons.
Methods: An analysis of the institutional process of obtaining TCD revealed several opportunities for improvement. Provider attention was diverted from TCD screening towards management of acute complications such as fever and pain, hydroxyurea management, vaccine administration and psychosocial issues. Other factors contributing to poor TCD completion rates included high no-show rates for annual comprehensive visits, routine preventive visits, and hospital follow-ups. In addition, there were barriers to scheduling and completion of TCD studies after order placement.
We hypothesized that by utilizing information technology (IT) tools we could improve TCD ordering and completion rates. Our IT team, in collaboration with our hematology team, designed and optimized the electronic clinic note specific to sickle cell disease in order to capture data such as age, sickle cell phenotype, eligibility for TCD, and last completed TCD date. Utilizing these data an innovative, real-time, sickle-cell dashboard was created and made available to all clinicians. In a single screen view, the dashboard displayed data regarding TCD eligible patients that needed an order for TCD, had a TCD scheduled, or were over-due or near-due for TCD. Amongst these, those who had upcoming appointments were especially highlighted in order to coordinate their clinic and TCD visits on the same day. The dashboard also highlighted patients who were overdue for TCD with no scheduled clinic appointments
This data was reviewed by sickle cell nurse coordinator, a physician champion and an IT representative at least weekly. Inaccuracies in data were identified and corrected. The action items were then presented at the weekly sickle cell team meeting and acted upon. We then measured TCD order and completion rates before and after the January 2019 implementation of the dashboard.
Results: In 2018 thirty-six orders for TCD were placed with eighteen completed studies (50%) versus 47 orders placed with 42 completed TCD in the first 7 months of 2019 (89%). These results were clinically significant (p=0.0001, Two-sided Fisher's exact test). As of July 31, 2019 out of 68 eligible patients, all but 2 had TCD orders placed (97%). Fifty-one patients were current on their TCD (75%) and the majority of those patients with missing TCD were noncompliant with clinic and radiology appointments. For the first 6 months of the year, an average of 93% of patients were compliant with annual TCD at the time of their clinic visit
Conclusion: An IT dashboard created using real-time data; collaboration and communication between clinical, IT and radiology teams; and action during regularly scheduled sickle cell team meetings resulted in marked improvement in TCD ordering and completion rates within a few months. The process was sustainable by training nursing and ancillary staff to utilize data. In the future, this sickle cell dashboard could be utilized to also improve other areas of sickle cell care such as immunizations and medication compliance.
Disclosures
Gomez: Alnylam: Consultancy; Novo Nordisk, Novartis, Pfizer, Sanofi, Takeda, UniQure: Research Funding.
Exchange Transfusion Therapy and Its Effects on Real-time Microcirculation in Pediatric Sickle Cell Anemia Patients
