National Coordinating and Evaluation Center
Sickle Cell Disease Association of America - Central Alabama Chapter (Birmingham, AL) Print

Sickle Cell Disease Association of America —
Central Alabama Chapter

Project Title: Sickle Cell Disease and Newborn Screening Program
Principal Investigator/Program Director: Sharon B. Lewis
Organization: Sickle Cell Disease Association of America Central Alabama Chapter
Address: 3813 Avenue I, Birmingham, Alabama 35218
Contact Person: Sharon B. Lewis
Phone: 205.780.2355 or 800.735.0405
Fax: 205.780.2368
E-Mail: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Purpose

The purpose of this grant is to connect all affected newborns with an integrated seamless system of care that addresses: the counseling/education needs of the parents of a child with sickle cell trait, the medical needs of the newborn with a sickle cell disease and the psychosocial needs of a family that is directly affected by a sickle condition.

Challenges

The major challenges are to increase family participation in counseling and follow-up services, and to establish a formal link between the Primary Medical Home Provider, community based sickle cell programs and the tertiary Comprehensive Sickle Cell Center. This link will ensure that families receive accurate information and timely intervention services, thus minimizing misconceptions about a sickle cell trait diagnosis and reducing morbidity and mortality risks for the newborn with disease.

Goals and Objectives

Programs will be initiated to improve parent and providers knowledge of sickle cell disease and trait and their understanding of how to access appropriate services. The project will also review current counseling/education protocols for trait follow-up to reduce misconceptions about the affects of sickle cell trait.

Methodology

Education Training programs will be developed and implemented for parents and providers. A training program called Baby STEP (Sickle Training and Education for Parents) has been designed to address the distinct clinical difference in various types of sickle cell disease and give parents information that will result in a healthier outcome for the affected child. A Provider Education Training Program will be developed and initiated to offer the Medical Home Primary Physician with information needed to adequately care for a newborn 0-2 years of age. Information concerning prophylaxis penicillin is especially critical for this age group. Compliance has shown that morbidity and mortality is greatly reduced when the recommended protocol is followed.

The success of the project will be based on parent and provider participation in the Training programs. The project will attempt to enroll all parents of newborns identified with sickle cell disease between 2001 and 2003 in the Parent Education program and will attempt to recruit participation from at least 50% of the physicians providing a medical home for these newborns.

Parents that have previously received sickle cell trait counseling/education will be surveyed to determine the extent to which they retained important facts about sickle cell trait and the value they place on the information received. Sickle cell counselors will attempt to reach at least 10 per cent of parents previously counseled since 2000 to evaluate the need to make program modifications to the trait follow-up program; however, 6 percent will be acceptable. This information will be used to make any needed modification to the current counseling/education protocols.

 

Experience to Date

The Sickle Cell Disease Association of America Central Alabama Chapter has been providing sickle education, testing, counseling and psychosocial services for the past 24 years. Important relationships have been established with medical and social service providers that offer services to families affected by sickle cell conditions. CAC was instrumental in the expansion of services available from Children’s Hospital. Most recently CAC was instrumental in identifying funding to hire a fulltime social worker dedicated to serving the pediatric population at Children’s Hospital.

Text Of Annotation

The purpose of this project is to enhance the Medical Home Physician’s knowledge of medical protocols for the care of newborns 0-2 years old; and for parents to become knowledgeable about sickle cell trait and disease.

 

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