Problem

All infants identified with sickle cell disease (SCD) by newborn screening deserve a medical home to ensure access to ongoing comprehensive health care that is family-centered and community-based. In the District, many infants identified with SCD fail to receive the benefits of standard of care because of lack of tracking, coordination and a multitude of other problems unique to inner city populations. Education and counseling for SCD and traits for related hemoglobinopathies are needed for the providers and the community at large to ensure that patients receive the highest standard of care and that families make informed reproductive decisions.

Goals and Objectives

1. Develop a well-coordinated intensive case management system for infants with SCD to establish a medical home to ensure ongoing comprehensive health care for each patient.

2. Link medical homes to comprehensive sickle cell sites and community services and promote the principles of family-centered care.

3. Improve the public's knowledge about SCD, related hemoglobinopathies and carrier states and the benefits of screening and comprehensive follow up.

Methodology

Step 1: develop ongoing comprehensive care through a medical home;

Step 2: create family/professional partnerships;

Step 3: implement an educational campaign; and

Step 4: measure and monitor results.

Coordination

The two major partners will be Howard University through its Center for Sickle Cell Disease, and the District of Columbia Department of Health which is the State Title V organization. Also, several local, regional, and national community-based and health-related organizations will participate in this project.
Evaluation: The project will develop a two-stage evaluation that involves a process and an outcomes evaluation. The purpose of the process evaluation will be to (1) describe the implemented program; and (2) determine the extent to which the program has been implemented as it was designed. The purpose of the outcome evaluation will be to determine whether the program achieved its intended objectives and goals.

Key Words

Sickle Cell Disease Case management. Children with Special Health Needs, Access to Health Care, Newborn Screening, Medical Home, Linkages, Community Based Health Services, Community Based Health Education.

Annotation

The purpose of DC GAPS is to facilitate the early identification of newborns with sickle cell and related hemoglobinopathies and integrate them into a system of care that is family-centered, community-based. and that focuses on a medical home for each child with SCD to ensure comprehensive state of art care and support for the family.

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Copyright © 2003, Sickle Cell Disease Association of America