Purpose

The purpose of this proposed project is two-fold:

1. enable families of children with SCD to receive improved and expanded services in disease education, counseling,, and psycho-social support
2. enable families with children diagnosed with SCD or as carriers through the newborn screening program to receive testing, genetic education and counseling services.

Challenges

1. Inadequate knowledge of SCD medical home concept among SCD stakeholders
2. Lack of pre-conception, testing, education and counseling services
3. Lack of post-conception, testing, education and counseling services
4. Lack of intervention services for academically and socially challenged SCD children and inadequate knowledge of SCD issues in schools

Goals and Objectives

Overall goal is to provide needed services to children with SCD and testing for at-risk families through collaboration with medical care providers and other SCD stakeholders to ensure a seamless continuum of care for affected children and families.

1. To improve knowledge of SCD medical home concept among SCD families, providers and community based SCD organizations,
2. To increase and improve parental health knowledge about SCD complications and treatment compliance issues,
3. To improve academic and social functioning of SCD children,
4. To provide testing services to parents and family members of children diagnosed with SCD or as carriers,
5. To provide carrier counseling to parents,
6. To provide Primary care provider education on SCD through partnership with experts at sickle cell centers.

Methodology

Proposed project implementation activities will include project planning, and training workshops on SCD medical home for parents, providers and staff. In this framework, primary care providers will provide straightforward pediatric sickle cell related care. Pediatric hematology cents in Dallas and Fort Worth will provide expertise in problem cases and emergencies. Community-based SCD organization staff will provide within the medical home, disease education, counseling, tutoring, support and testing services. Collaboration and coordination plans will allow group connectivity and interdependencies at state level for patient enrollment and at national levels for standardization of protocols and leadership.

Evaluation

Process and outcome evaluation plans have been specifically formulated to allow determination of achievement of project objectives on planned versus actual basis.

Experience to Date

Date and national chapter members; affiliated with Texas Department of Health, Texas Genetics Network (TEXGENE); provide Hemoglobinopathy Educator Certification Program in Texas, past recipients of prestigious Innovative grant awards.

Text of Annotation

This project provides SCD education, counseling, testing and outreach services for children and families with SCD and trait to fill identified services gaps in their medical home. Objectives are measurable with process and outcomes evaluation plans. The proposed project will serve 900-1000 children with sickle cell disease and a target population of 30,000 carriers in North Central Texas through collaboration at state and national levels.

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