Translating sickle cell guidelines into practice for primary care providers with Project ECHO

Abstract

BackgroundApproximately 100,000 persons with sickle cell disease (SCD) live in the United States, including 15,000 in the Midwest. Unfortunately, many patients experience poor health outcomes due to limited access to primary care providers (PCPs) who are prepared to deliver evidence-based SCD care. Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional network established to improve care and outcomes for individuals with SCD living in Indiana, Illinois, Michigan, Minnesota, Ohio, and Wisconsin.MethodsSTORM investigators hypothesized that Project ECHO® methodology could be replicated to create a low-cost, high-impact intervention to train PCPs in evidence-based care for pediatric and young adult patients with SCD in the Midwest, called STORM TeleECHO. This approach utilizes video technology for monthly telementoring clinics consisting of didactic and case-based presentations focused on the National Heart, Lung and Blood Institute (NHLBI) evidence-based guidelines for SCD.ResultsNetwork leads in each of the STORM states assisted with developing the curriculum and are recruiting providers for monthly clinics. To assess STORM TeleECHO feasibility and acceptability, monthly attendance and satisfaction data are collected. Changes in self-reported knowledge, comfort, and practice patterns will be compared with pre-participation, and 6 and 12 months after participation.ConclusionsSTORM TeleECHO has the potential to increase implementation of the NHLBI evidence-based guidelines, especially increased use of hydroxyurea, resulting in improvements in the quality of care and outcomes for children and young adults with SCD. This model could be replicated in other pediatric chronic illness conditions to improve PCP knowledge and confidence in delivering evidence-based care.

Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers

“…SCD experts have developed an mHealth apps for health care providers to increase the adoption of the 2014 guidelines [ 11 ]. Others have created educational programs using telemedicine to educate providers about these guidelines [ 12 ]. However, to date no national strategy has been developed to make these guidelines patient-centered, accessible and comprehensible for individuals with SCD.…”

“…This report used the GRADE method to define and create evidence-based guidelines [ 7 ], and informs health care providers’ approaches to screening to prevent diseases or complications of chronic diseases, selecting treatments, monitoring and preventing complications, educating about disease, and counseling for individuals with SCD [ 8 ]. Recognizing the importance of disseminating the guidelines and given the ubiquitous access to information technology [ 9 , 10 ], provider-facing mobile health (mHealth) applications (apps) [ 11 ] and telemedicine interventions have been developed to educate providers about SCD guidelines [ 9 , 10 , 12 ]. However, to date no national strategy has been developed to make these SCD-related guidelines; hereafter, referred to as guidelines , patient-centered.…”

Implementing a standard-of-care clinic for stroke prevention in children with sickle cell disease in Nigeria: a feasible strategy outside a clinical trial setting

“…The minimum acceptable correlation coefficient between the trainer and trainee was 0.76 for each side (85% of the trainer correlation in the same individual performed only hours apart). 3 We conducted 3 education workshops based on National Heart Lung and Blood Institute sickle cell disease (SCD) management guidelines for primary care providers, 4,5 and adapted for medical care in low-resource settings, we also trained $2 nurses and community health workers per clinic on the management of children with SCA. A child neurologist provided instructions on how to detect a stroke and stroke-related comorbidities (e.g., seizures) at 2 of 3 workshops.…”

Specialized Care without the Subspecialist: A Value Opportunity for Secondary Care

“…Originally conceived for the community-based management of hepatitis C in New Mexico, models such as Project ECHO provide the added benefit of disseminating specialized knowledge for primary care providers and empowering patients and community-based providers to partner in delivering high-quality community care. These networks have already been established for primary care providers caring for a number of pediatric chronic conditions like Sickle Cell Disease [ 11 ]. Other initiatives focused on promoting high value care like Choosing Wisely can also be leveraged to spread knowledge and uptake of secondary care [ 12 ].…”