Using Telementoring to Improve Care for Patients With Sickle Cell Disease

Posted April 19, 2016 by Sonya Spillmann, RN

Telementoring ECHO
Telementoring connects healthcare providers with experts to learn appropriate care techniques for needs like sickle cell disease.
In the United States, nearly 100,000 people have the inherited red blood cell disorder sickle cell disease (SCD), yet access to knowledgeable providers throughout their lifespan is one of the biggest challenges for these patients. With a desire to narrow this disparity, groups of SCD experts are teaching healthcare providers how to capably manage patients with SCD by harnessing the power of technology.

The Sickle Cell Disease Treatment Demonstration Program (SCDTDP), supported by the Health Resources and Services Administration and coordinated by NICHQ, has four regional coordinating centers (Northeast, Midwest, Heartland and Pacific) who are collaborating to improve the healthcare quality of patients with SCD. The SCDTDP’s three main objectives are to increase: the number of providers who can treat patients with SCD, the number of patients seen regularly by knowledgeable providers, and the frequency of hydroxurea prescriptions for treatment. (Hydroxurea is the only Food and Drug Administration approved treatment for SCD among adult patients.) The regional coordinating centers plan to meet these goals, in part, by utilizing telementoring.

Telementoring is a mechanism where knowledgeable providers can video conference with distant providers to share information and teach appropriate care. Because many SCD patients live great distances from regional care centers with SCD experts, telementoring improves the ongoing management of patients with SCD.

“As a patient, you want a provider where you live who can give you the care you need,” says Rosalyn Stewart, MD, MS, MBA, co-project director of the Northeast regional grantee team. Since patients with SCD suffer from episodes of sudden, extreme pain, she says, “patients need convenient and consistent access to knowledgeable caregivers without having to travel to a regional sickle cell center.”

John Strouse, MD, PhD, co-project director of the Northeast regional grantee team adds, “When SCD patients show up at their local hospital, we want to make sure their providers are comfortable and knowledgeable in taking care of them. If they aren’t, we want them to know they can reach out and get support, ideally, though this telementoring program.”

The Northeast region, covering eight states, Washington, DC, Puerto Rico, and the U.S. Virgin Islands, utilizes Project ECHO™, a hub and spokes model of telementoring. The northeast team, led by Stewart and Strouse, and managed by Research Program Manager Lauren Whiteman, MPH, CPH, launched their telementoring program in September 2015. Sophie Lanzkron, MD, one of the leading adult hematologists in the country, runs the ECHO telementoring group out of Johns Hopkins in Maryland. Other members of the group include C. Patrick Carroll, MD, a psychiatrist specializing pain management in SCD, community health workers and members of the sickle cell infusion care center team.

A weekly 75 minute session consists of two case presentations by the spoke sites, followed by care recommendations from the experts at the hub, and concludes with a didactic session covering major aspects of sickle cell care. Participants attending the session receive CME credit and a written summary of the recommendations made for each case study.

Over time, this model lets providers become part of a knowledge network, and then they become local experts who can better treat patients with SCD at their sites. “Providers also gain help in referring patients to regional care centers, when necessary, through these professional connections,” says Stewart.

Members of the four SCDTDP regional coordinating centers participate in a telementoring working group that meets monthly. Teams share successes, challenges and collaborate on how to best utilize ECHO and make it as impactful as possible.

Measuring Outcomes
At the start of the telementoring program in the Northeast, each participant at a spoke site took a baseline assessment on skills, attitudes and thoughts about caring for patients with SCD. Anticipating the results of their first six month re-evaluation, Whiteman says, “we expect to see positive improvement in attitudes, increased comfort in managing patients with SCD and improved skill self-assessment.”

Anecdotally, the Northeast coordinating center team already notices positive changes in workflow, improvement in opiate use assessment and progress on the transition from inpatient to outpatient care by the spoke sites.

“We want to empower the people at our spoke sites to be change agents at their institutions,” explains Strouse.

With four current spoke sites, the Northeast coordinating center team is actively recruiting additional participants. Ideal spoke sites are community hospitals, hospitalists, emergency department physicians and any healthcare professionals or community health workers who see sickle cell patients.

“We’d like to increase the number of spokes to improve outreach and make this into a really vibrant telementoring clinic,” says Strouse. “ECHO allows us to overcome the barrier of distance to multiply what we can do.”


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