Purpose

The purpose of the project is to improve follow-up program outcomes for children and families diagnosed with sickle cell disease (SCD) or trait through the Texas Newborn Screening Program.

Challenges

(1) Pervasive lack of awareness of sickle cell risk among the target population. (2) Lack of effective parental notification and referral mechanisms to ensure family access to required testing, education, counseling and support services. (3) Inadequate parental health knowledge and health supervision to improve outcomes for children affected by sickle cell disease (4) Inadequate medical homes that limit children’s access to care that is accessible, family centered, culturally competent, compassionate, comprehensive and continuous.

Goals and Objectives

The ultimate goal is to improve the lives of children and families affected by sickle cell disorders through an effective implementation of the newborn screening follow-up program services. The following objectives have been specifically designed as a practical and reliable roadmap to reaching the project’s stated ultimate goal.

Specific Objectives:

1. By August 2005, the project will have developed and implemented a multimedia campaign that increased awareness and provided needed follow-up information to 10,000 out of 30,000 families diagnosed with sickle cell disorders in North Texas.
2. By August 2005, the project will have improved newborn follow-up rates and increased the number of families that are linked to services through the Newborn Cohort Data Coordination Initiatives based at Southwestern Comprehensive Sickle Cell Center in Dallas.
3. By August 2005, the project will have improved parental SCD health knowledge among project participants by 50% and also increased by 50% the number that received services in education, testing, counseling and support services.
4. By August 2005, the project will have improved by 50% the quality of Medical homes for children enrolled in the Newborn Cohort Database.

Methodology

Project objective #1

The campaign will employ professionally produced public service announcements (PSAs) on television, radio, newspapers, in-theater advertising, outdoor billboards, campaign brochures and web site to increase community awareness of sickle cell newborn screening issues. These multilingual and varied communication platforms have been specifically selected as the most effective and sustainable strategies for reaching the large number of affected individuals with information on the availability of local SCD service networks for testing, education counseling and support services.

Project objective #2

Project objective #2 will be achieved by planning and establishing the Newborn Cohort Data Coordination Center (NCDCC) at Southwestern Comprehensive Sickle Cell Center in Dallas. The data coordinator will be an employee of SW Comprehensive Sickle Cell Center with authorized access to newborn screening trait and SCD information from Texas Department of Health (TDH). As designed the Center will provide needed follow-up service coordination between those with trait or disease and SCD service providers through a smooth and efficient referral mechanisms.

Project Objective #3

Project Objective #3 will be achieved by providing health education, testing, counseling and support services to affected families. Positive audience response to PSAs, web site hits and effective tracking by the Cohort coordinator will synergize to form an amplified notification mechanism for increasing enrollment of families to receive required services.

Project objective #4

Project objective #4 will be achieved first by determining the baseline measures of the quality of the child’s medical home provided by the corresponding PCP. The results will be analyzed to identify specific areas of the medical home that need improvement by families as well as by PCPs. Remediation plans will be specifically developed through collaboration to correct the identified deficiencies. This includes family and PCP education about the medical home concept and changes required to improve the medical home family indexes.

Evaluation

This proposal has developed sound progress monitoring and outcome evaluation plans that have been specifically formulated to allow independent determination of achievement of clearly defined project objectives on planned versus actual basis.

Awareness campaign benchmarks:

1. number of media placements,
2. viewer-ship,
3. readership,
4. hotline calls, and
5. tally of respondents requesting, sickle cell service information, testing, counseling and referrals.

Newborn Cohort Data Coordination Initiative benchmarks:

1. number of children enrolled in the database (disease and trait),
2. completeness, accuracy and updates of information in the registry.
3. percent of children with SCD who have a medical home and linked to required services.
4. percent of families affected by trait with referrals to SCDAA-Dallas to receive education, testing and counseling services.

Health Education for patients and families benchmarks:

1. pre/post tests cores,
2. child’s health status indicators (pain control, number of hospitalizations, quality of life and psychosocial measures) will be compared at intervals after the educational interventions against baseline values to determine program effectiveness.
   Parent satisfaction surveys.

Experience to Date

(1) HRSA grantee (2002-2003), (2) Recipient of Texas Department of Health Title V Block grants for Population–based Genetic Services (3) Collaborative partnership with Southwestern Comprehensive Sickle Cell Center in Dallas that was awarded a 5-year , 8.5 million National Institutes of Health (NIH) Comprehensive Sickle Center grant under the distinguished leadership of Dr. George Buchanan (4) partnered with Design America and AMS Production Group to develop a 3-year public campaign “Check for the Trait/Notification”, to raise awareness about SCD and trait issues in the State of Texas.

Text of Annotation

Texas’ children and families diagnosed with sickle cell trait or disease through newborn screening have very limited access to required services in education, counseling, medical and support services. This is because the state’s newborn notification and follow-up program services are antiquated, inefficient and ineffective. Although African Americans are at the highest risk for having children with sickle cell disease, they political power to effect legislative changes to improve parental notification. This project proposes using a multimedia campaign and Newborn Cohort Data Coordination initiative to link affected families to medical homes and services that improve outcomes.

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