Introduction

Approximately 15,000 individuals in the Midwest live with sickle cell disease (SCD), a lifelong, painful disorder with complications and comorbidities. Providers self-report limited knowledge and confidence in treating patients with SCD, leading to limited access to providers knowledgeable about evidence-based management and treatment guidelines and therefore poor health outcomes for patients.

Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional sickle cell network, established to improve outcomes for individuals with SCD living in Indiana, Illinois, Michigan, Minnesota, North Dakota, Ohio, South Dakota and Wisconsin. One goal of STORM is to increase provider knowledge about evidence-based management of SCD. STORM TeleECHO, a replication of the Project ECHO (Extension for Community Healthcare Outcomes) telementoring model, was launched in March 2016 as an innovative, lifespan approach to provider education in the Midwest. In March 2020, in response to the COVID-19 public health pandemic, the STORM coordinating team quickly pivoted to host additional COVID-19 and SCD focused ECHO sessions.

Methods

STORM TeleECHO virtual clinics include didactic presentations with a curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of Sickle Cell Disease guidelines, as well as a de-identified case discussion presented by providers seeking feedback on the management of challenging clinical scenarios. Other additional medical and psychosocial issues have also been presented. Participants join the monthly hour-long sessions using Zoom© or telephone.

COVID-19 and SCD sessions followed the same format and topics focused on emerging medical and psychosocial pandemic issues, such as: serology, multi-system inflammatory syndrome in children, the COVID and SCD surveillance registry, blood safety and transfusion practices, telemedicine, back to school issues, mental health, and Sickle Cell Disease Association of America patient and provider advisories. These sessions also provided an open forum for this hematology/primary care provider community of practice to share rapidly changing clinical practices and patient resources.

Results

Since March 2016, 58 sessions have been held with over 175 unique attendees. Evaluation data shows 100% of providers will continue participating and would recommend STORM TeleECHO to a colleague. Over 80% reported learning best practice guidelines for SCD; developing clinical expertise; and applying knowledge into practice. Data analysis has shown a statistically significant increase in provider confidence to identify eligible candidates and prescribing hydroxyurea. STORM has awarded over 750 CME credits (since 2016), over 300 MOC Part II from the American Board of Pediatrics and the American Board of Internal Medicine (since 2017) and 70 CNE credits (since 2019).

Since March 2020, the 11 special COVID-19 sessions have averaged 42 attendees per session- nearly a 150% increase compared to the standing ECHO sessions in previous years (Table 1). Over 115 unique providers have attended at least one COVID-19 session, with 61 participants being new to STORM TeleECHO. Participants have cumulatively attended an average of 4 COVID-19 sessions and represented 17 states and Canada. On average, 93% of respondents rated the COVID-19 STORM TeleECHO sessions as "very good" or "excellent".

Discussion

STORM TeleECHO has been instrumental in increasing knowledge and comfort of providers caring for patients with SCD. Data shows that STORM TeleECHO has the potential to improve outcomes and decrease health disparities in this underserved and medically vulnerable population. Moreover, STORM COVID-19 and SCD TeleECHO session participants have been highly satisfied with this educational forum for addressing emerging issues during the public health emergency. Our program quickly and successfully leveraged the existing STORM TeleECHO framework to expand educational forums for this community of practice. The continued increase in participants sustained throughout the COVID-19 ECHO's has demonstrated the need and interest for this educational forum to share practice changes, new clinical protocols, patient education and other resources. While the regular STORM TeleECHO sessions will continue, there are also plans to continue the additional COVID-ECHO sessions for the foreseeable future.

Disclosures

No relevant conflicts of interest to declare.

Author notes

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Asterisk with author names denotes non-ASH members.

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