Problem

In western PA, 100% newborn screening (NBS) positive with sickle cell disease (SCD) are enrolled in comprehensive care, 97% hemoglobinopathy traits have been notified, 50% of the families were reached by telephone and 95% of those contacted received genetic counseling, but acceptance of extended family testing is low.

Goal

The long term goal is to enhance support, counseling, education follow-up and comprehensive care of newborns screening positive SCD or trait and their families
Objective 1: Education of health care providers and the community to increase awareness of SCD, trait and to improve NBS follow-up, uptake of extended family testing and genetic counseling.

Objective 2: Enhance education and counseling of families with a newborn screening positive for SCD or trait, through the provision of systematic follow-up, support, education and improving access to genetic counseling and extended family testing.

Objective 3: Enhance care of infants screening positive for SCD through psychosocial support, intensive case management, telephone delivered reinforcement of health related behaviors, comprehensive transition readiness education and readily available patient health information at point of care.

Methodology

Children's hospital of Pittsburgh (CHP) provides NBS follow-up and comprehensive care for infants with SCD or trait in western Pennsylvania and is part of the Western Pennsylvania sickle cell network, a cooperative network of all SCD related community based, and consumer organizations and health care providers Trait follow-up is being further enhanced by systematic follow-up, intensive case management, use of videotape delivered trait information, accessible professional genetic counseling, premarital and prenatal education and integration of primary care providers and community based organizations into systems of care. Care of infants with SCD will be enhanced by psychosocial support, intensive case management and structured telephone-delivered reinforcement of health behaviors and a comprehensive transition readiness program. Awareness of SCD and trait, importance of comprehensive care, extended family testing and counseling among health care providers will be enhanced by symposia and outreach lectures, CD-ROM and web enabled training modules and a culturally sensitive community based education program.

Coordination

Pennsylvania department of health oversees newborn screening follow-up through its contractual relationship with CHP. We will coordinate with all SCD related community and consumer organizations in the region to implement an integrated system of care. We will coordinate with National Coordination and Evaluation Center in the development of educational materials and in the monitoring of program implementation.

Evaluation

The effectiveness of the project will be monitored by: 1) Impact on health outcomes such as effectiveness of follow-up and counseling for SCD or trait, adherence to comprehensive care and impact of counseling on personal lives of those counseled 2) Effectiveness of the project iri meeting the learning needs of individuals who participate in training activities 3) Effectiveness of the overall organizational and administrative structure. Annotation: Follow-up, care, education and counseling of families with infants screening positive for sickle cell disease or trait is sought to be enhanced through a regional cooperative community based network by systematic follow-up, intensive case management, professional and community education, telephone based education and support, comprehensive transition readiness education and readily available patient health information at point of care.

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