264548 An innovative newborn screening program for hemoglobinopathies: Improving access to care for an underserved population

Monday, October 29, 2012

Kisha Braswell, MPH , Indiana Hemophilia & Thrombosis Center, Inc., Indianapolis, IN
Chris Roberson, JD/MPH , Indiana Hemophilia & Thrombosis Center, Inc., Indianapolis, IN
Natalie Duncan, MPH , Indiana Hemophilia & Thrombosis Center, Inc., Indianapolis, IN
Whitney Sealls, PhD , Indiana Hemophilia & Thrombosis Center, Inc., Indianapolis, IN
Angeli Rampersad, MD , Indiana Hemophilia & Thrombosis Center, Inc., Indianapolis, IN
Amy Shapiro, MD , Indiana Hemophilia & Thrombosis Center, Inc., Indianapolis, IN
  
Background: Approximately 100,000 people in the U.S. are living with sickle cell disease (SCD). To reduce SCD-associated morbidity and mortality each state must implement an appropriate newborn screening program. To address the historic inconsistent follow-up of infants identified as having a hemoglobinopathy by Indiana's newborn screen, the Indiana Hemophilia and Thrombosis Center (IHTC) developed the Sickle-SAFE (Screening, Assessment, Follow-up, Education) Program. The objective is to provide prompt, personalized education and care services to diagnosed infants.

Methods: A Sickle-SAFE Program Coordinator conducts a home visit for affected patients by one month of age and utilizes education, assessments and buccal swab red blood cell (RBC) antigen testing to increase knowledge, identify barriers, and improve outcomes. Education focuses on disease subtype, pathophysiology, and manifestations. A needs/risk assessment identifies socio-environmental factors that may impact care. Buccal swab RBC antigen testing is performed to decrease the risk of alloimmunization.

Results: All affected infants born in Indiana receive consistent education and follow-up services and are linked to a medical home. Free red blood cell antigen testing is offered to all diagnosed infants and consistent follow-up with families is maintained to ensure all infants receive appropriate care. The needs/risk assessment is undergoing validation to risk-stratify patients.

Conclusions: The Sickle-SAFE Program has ensured comprehensive care for newborns with a hemoglobinopathy in Indiana. The long-term goal is to advance patient care and improve quality of life. This program demonstrates an effective model that could be replicated by other states seeking to improve follow-up care for infants with SCD.

Learning Areas:
Administer health education strategies, interventions and programs
Chronic disease management and prevention
Implementation of health education strategies, interventions and programs

Learning Objectives:
Identify strategies for improvements to newborn screening programs for hemoglobinopathies. Discuss importance of screening adoption.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have provided newborn screening, educational follow-up services for hemoglobinopathies in Indiana on the county and state level. I have presented at state, regional and national sickle cell conferences. Among my scientific interests have been the development of educational strategies and assessment tools designed for improving access to care and quality of life for infants born with sickle cell disease and other hemoglobinopathies.
Any relevant financial relationships? Yes

Name of Organization Clinical/Research Area Type of relationship
Indiana Hemophilia & Thrombosis Center, Inc. Program Coordinator Employment (includes retainer)

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 3165.0: Lifespan Communication: Health Behavior in Children, Adolescents, and Teens (Organized by HCWG)