Problem

Texas State policies and severe budget cuts limit access of newborns and families diagnosed with Sickle Cell Disease or traits to timely required follow-up services.

Goals and Objectives

GOAL #1: Increase knowledge about SCD complications among families with SCD children.
Objective #1: Increased knowledge of SCD complications by 50%.
Objective #2: Increased knowledge of SCD inheritance pattern by50%.
Objective #3: Increased parental SCD self-efficacy by 50%.

GOAL #2: Increase knowledge about sickle cell trait among families with trait children.
Objective #1: Increased knowledge of trait inheritance pattern by 50%.
Objective #2: Increased sickle cell trait self-efficacy by 50%.

GOAL #3: Provide medical home to SCD children and educate providers.
Objective #1: Continued best practices model with 95%follow-up of SCD children.
Objective #2: Increased competency of primary care providers by 30%.
Objective #3: Increased outreach to families in rural North East Texas by 30%.

GOAL #4: Reduce adverse impact of sickle cell disease on the community
Objective #1: Increased awareness of sickle cell risk from 70% to a target of90%.
Objective #2: Increased knowledge of sickle trait status of 6,000 untested individuals.
Objective #3: Increased sickle cell trait self-efficacy of600 carriers by 50%

GOAL #5: Ensure SCD children have support and case management services
Objective #1: Reduced waiting time for finding primary care providers by 50%.
Objective #2: Increased family access .to support services from 10 % to a target of 60%
Objective #3: Increased blood donation to children with SCD by 15%

Methodology

Qualitative, quantitative, culturally competent assessments and service delivery at individual, family and community levels of analysis. Children have Medical homes at Southwestern Comprehensive Sickle Cell Center and Community-based Primary Care Centers.

Coordination

Project is coordinated with Southwestern Comprehensive Sickle Cell Center, Dallas, practitioners, Texas State, HRSA -grantees and National Coordinating Center.

Evaluation

Process and outcome-based evaluations using indicators to track the latter.

Key Words

Sickle Cell Disease, Medical Home, Hemoglobinopathies, Ethics, Genetic Screening, Genetic Counseling, African Americans

Annotation

The project provides medical homes, comprehensive medical care and follow-up of SCD children. Parents of children with SCD or trait are provided anticipatory guidance, education extended family testing, genetic counseling and support. Providers benefit from professional education that improves their competencies in managing patients with SCD.

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Copyright © 2003, Sickle Cell Disease Association of America