Purpose

The Purpose of Improving Hemoglobinopathy Screening Follow-up and Services for affected families in Cincinnati Project is to improve newborn screening follow-up for sickle cell disease and trait both short term and long term, to enhance community and national awareness and support of sickle cell issues, and to develop a community-based support system for families affected by sickle cell disease.

Challenges

Despite the CCSCC’s thirty-year experience in newborn screening, follow-up for sickle trait is only 30% of the 500-600 infants per year in our region with trait receive confirmatory test­ing. We believe concerted effort by a network of primary health care providers, social service, educational, corporate systems; state and national institutions as well as the community at large is needed to achieve the MCHB National agenda for CSHCN: family participation and satisfaction; access to medical home; access to affordable insurance; early and continuous screening; easy-to-access, community-based services systems; services necessary to transition to adulthood. Sustaining an effective community-based support system for families within a CBO is a challenge. Other challenges include partnering with families with abnormal hemoglobin newborn screening results, assessing their needs and educating health professionals both obstetricians and pediatricians on policies and procedures needed to address those needs. On state and national levels, coordination and sharing of resources for prenatal screening, counseling, education and newborn screening follow-up is needed to create a seamless sys­tem of genetic, medical and psycho­social services for those affected by or at risk for sickle cell disease.

Goals and Objectives

Specific Goals for this project are to:

1. Develop a comprehensive, community-based support system within the Sickle Cell Awareness Group of Greater Cincinnati, Inc. for affected individuals and families, and increase community awareness of sickle cell trait and its implications.
2. Improve follow-up for infants identified with sickle trait through enhance professional and patient education at the obstetrical level.
3. Collaborate with Ohio Regional Sickle Cell Program and Ohio State Public Health Laboratory in providing services for individuals and families affected by sickle cell disease.
4. Collaborate with the National Coordinating Center (Project 1) to develop certification standards for hemoglobinopathy counseling, to provide data management tools and educational material for newborn screening follow-up to local and regional community-based programs.

Methodology

The CCSCC will provide leadership for the partnership of community-based sickle cell organization SCAG, health care providers, Ohio state sickle cell program, Title V, Ohio laboratory in the effort to identify the needs of families with abnormal hemoglobin newborn screening results in this region. SCAG will sustain a community-based family support group by recruiting affected families through the CCSCC, involving community volunteers and organizations in support group activities, and edu­cating the general public about sickle cell issues, including the need for follow-up of newborn diagnosis of trait. The CCSCC will conduct a program of education, counseling and publicity targeting obstetricians and prenatal clients, to increase utilization of prenatal screening to improve the rate of trait follow-up for newborns. The CCSCC and SCAG will contribute their three dec­ades of expertise and materials on partnership, counselor training and data management for prenatal and newborn screening and collaboration to the national effort embodied in Project 1 to standardize and expand these efforts.

Evaluation

The evaluation plan includes an ongoing assessment of project effectiveness in meeting the goals, objectives, outcomes and performance indicators outlined in Quantitative and Qualitative Work Matrix (Attachment I). Attendance and utilization data, satisfaction surveys will assess the effectiveness of the project in meeting client needs. A project valuator and cultural anthropologist consultant will work with the principle investigator and staff to provide information to evaluate the overall effectiveness of the interventions.

Experience to Date

The CCSCC and SCAG have a thirty-year history of collaboration and service to the sickle cell community. As a partner in the Cincinnati Sickle Cell Center Grant from NIH, SCAG participates in the CCSCC Transition Project. As a FY2002 HRSA funded grantee in the Sickle Cell Newborn Screening Program, our collaboration has achieved strengthening community support, evaluating the needs regarding newborn screening follow-up for hemoglobinopathies at the obstetric level and educating both consumers and professionals.

Text of Annotation

This collaborative effort by an established treatment-center (CCSCC) and a community-based organization (SCAG) addresses the dual problems of inadequate follow-up for sickle cell trait and the lack of community-based support services for affected families. We aim to improve follow-up by an educational effort targeted to obstetricians and prenatal clients, as well as the community at large. We will contribute to the national effort to improve sickle cell services by contributing the expertise and materials in prenatal diagnosis, sickle cell counseling, and new­born screening data management developed by the CCSCC and SCAG in three decades of service to the sickle cell community.

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