title: Translating sickle cell guidelines into practice for primary care providers with Project ECHO.
abstract: BACKGROUND
  Approximately 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.
  
  
  METHODS
  STORM 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.
  
  
  RESULTS
  Network 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.
  
  
  CONCLUSIONS
  STORM 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.
authors.affiliation: Department of Pediatrics, Cincinnati Comprehensive Sickle Cell Center, Division of Hematology, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; lisa.shook@cchmc.org.
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Shook
authors.affiliation: Department of Pediatrics, Cincinnati Comprehensive Sickle Cell Center, Division of Hematology, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
authors.forename: Christina B
authors.initials: CB
authors.lastname: Farrell
authors.affiliation: Department of Pediatrics, Cincinnati Comprehensive Sickle Cell Center, Division of Hematology, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
authors.forename: Karen A
authors.initials: KA
authors.lastname: Kalinyak
authors.affiliation: Children's Hospitals and Clinics, Minneapolis, MN, USA.
authors.forename: Stephen C
authors.initials: SC
authors.lastname: Nelson
authors.affiliation: Indiana Hemophilia and Thrombosis Center, Inc., Indianapolis, IN, USA.
authors.forename: Brandon M
authors.initials: BM
authors.lastname: Hardesty
authors.affiliation: Indiana Hemophilia and Thrombosis Center, Inc., Indianapolis, IN, USA.
authors.forename: Angeli G
authors.initials: AG
authors.lastname: Rampersad
authors.affiliation: Children's Hospital of Illinois, OSF Saint Francis Medical Center, University of Illinois College of Medicine, Peoria, IL, USA.
authors.forename: Kay L
authors.initials: KL
authors.lastname: Saving
authors.affiliation: Sickle Cell Disease Association of America, Michigan Chapter, Detroit, MI.
authors.forename: Wanda J
authors.initials: WJ
authors.lastname: Whitten-Shurney
authors.affiliation: Children's Hospital of Wisconsin, Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Julie A
authors.initials: JA
authors.lastname: Panepinto
authors.affiliation: Department of Pediatrics, Cincinnati Comprehensive Sickle Cell Center, Division of Hematology, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
authors.forename: Russell E
authors.initials: RE
authors.lastname: Ware
authors.affiliation: Division of Behavioral Medicine, Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
authors.forename: Lori E
authors.initials: LE
authors.lastname: Crosby
mesh_terms: D000755:Anemia, Sickle Cell / Q000628:therapy*; D002983:Clinical Competence; D004496:Education, Continuing / Q000379:methods*; D020375:Education, Distance / Q000379:methods*; D055317:Evidence-Based Practice; D017410:Practice Guidelines as Topic; D011320:Primary Health Care / Q000458:organization & administration*; D015397:Program Evaluation; D020377:Self Efficacy; D014481:United States
keywords: continuing education; provider education; sickle cell disease; telementoring