Problem

The BabySteps Program will improve the quality of care of young children with sickle cell disease and hemoglobin traits, ages 0 to 3, in Los Angeles and the state by providing a statewide conference, disease education, website, InfoLine, Patient InfoCard with Fax-Back Treatment Protocols and more.

Goals and Objectives

Goal 1: To increase the awareness of sickle cell disease and hemoglobin traits among consumers and providers throughout California.
Objective 1: By May 31, 2006, at least 60% of the respondents that participate in the statewide stakeholder conference will report an increase in awareness about the needs, challenges and successful strategies for supporting individuals and families directly affected by SCD and hemoglobin traits.
Objective 2: By May 31, 2006, at least 80% of the primary care and social service providers in the community that participate in the program will report an increase in knowledge of the significance of SCD, hemoglobin traits and the importance of family follow-up testing. :
Objective 3: By May 31, 2006, at least 60% of the community members that participate in the program will report an increase in knowledge about the significance of hemoglobin traits and the importance of family follow-up testing as it relates to SCD.

Goal 2: To improve the ability of families to care for and nurture infants and young children with sickle cell disease ages 0 to 3 in Los Angeles County and throughout the state of California.
Objective 1: By May 31, 2006, at least 75% of the families that participate in the program will report an increase in knowledge about the basic pathophysiology of SCD, warning signs of disease complications, appropriate home health maintenance and preventive care.
Objective 2: By May 31, 2006, at least 80% of the families that participate in the program will report an increase in knowledge of the other resources available at the SCDFC and in the community, as well as how to access those resources. Objective 3: By May 31, 2006, at least 60% of the program participants will report an improvement in patient compliance and well child care and specialty care services including immunizations and prophylactic penicillin treatment.

Goal 3: To expand the capacity of health care providers to respond to the clinical and psychosocial needs of individuals with sickle cell disease in California, with emphasis on the Emergency Department.
Objective 1: By May 31, 2006, at least 50% of the health care providers in the Northern and Southern Regions of California that participate in the program will report improved access to standards for SCD care provided in emergency departments.
Objective 2: By May 31, 2006, at least 80% of ED personnel and other providers who participate in the program will report an increase in understanding regarding the management of SCD.
Objective 3: By May 31, 2006, at least 75% of the providers that participate in the program will report and increase in knowledge about the psychosocial needs of families with young children with SCD and how to access SCDFC programs and services to meet these needs.

Activities / Methodology

The SCDFC will work collaboratively with Children’s Hospital and Research Center at Oakland's Talking Drums Program, the California Newborn Screening Program and local comprehensive sickle cell centers to complete the work of this grant. These collaborations will allow the SCDFC to expand upon our successful client education and case management program implemented through the last funding cycle, create a standard provider education program that will span Northern and Southern California, hold an annual statewide conference, and create and maintain innovative technology-based educational tools that will reach participants in all regions of California. These tools will include a comprehensive website that will bring all information and referrals related to sickle cell disease and hemoglobin traits together on one site - including web-based treatment protocols for physicians, a toll free InfoLine where families without Internet access can access all the same information, a patient information card with an individual's pertinent baseline clinical data to be used in the emergency room, and a fax-back system that allows Emergency Department providers to access treatment protocols for the most commonly seen complications of sickle cell disease.

Healthy People 2010 objectives:
(1) Related to Objective 16.23. Increase the proportion of Territories and States that have service systems for Children with Special Health Care Needs to 100 percent.
(2) Related to Objective 16.23: Increase the proportion of States and jurisdictions that have service systems for children with or at risk for chronic and disabling conditions as required by Public Law 101-239.
(3) Related to Objective 23.11 (Developmental) Increase the proportion of State and local public health agencies that meet national performance standards for essential public health services.
(4) Related to Objective 23.15 (Developmental) Increase the proportion of Federal, Tribal, State, and local jurisdictions' that review and evaluate the extent to which their statutes, ordinances, and bylaws assure the delivery of essential public health services.

Coordination

California Department of Health Services, Genetic Disease Branch, Newborn Screening Section Children’s Hospital and Research Center at Oakland’s Talking Drums Program Children’s Hospital Los Angeles Long Beach Memorial Pediatric and Adolescent Hematology Oncology Associates Cedars-Sinai Medical Center Kaiser Permanente UCLA and Harbor-UCLA Newborn Screening Area Service Centers Sickle Cell Disease Association of America/National Coordinating and Evaluation Center

Evaluation

Evaluation for the proposed program will be conducted by an outside evaluation firm, Brilliance Strategies, Inc. lead by Yolanda Gorman, PhD, MBA. It will be a multi-part data collection and analysis effort that will provide feedback to program staff, funders and administrators regarding various component and aspects of the program. The evaluation will include both progress monitoring and outcome evaluation data.

Key Words

Sickle cell disease, Hemoglobinopathies, Newborn screening, Parent education programs, Case-management, Genetic disorders, Health education, Professional education, Parent support services, African-American

Annotation

The Sickle Cell Disease Foundation of California's BabySteps Program will improve the quality of care received by infants and young children with sickle cell disease and hemoglobin traits, ages 0 to 3. During this program, the SCDFC will work collaboratively with Children’s Hospital and Research Center at Oakland's Talking Drums Program, California's Newborn Screening Program and local comprehensive sickle cell centers to 1) increase the awareness of the disease and hemoglobin traits among consumers and providers, 2) improve the ability of families to care for infants and young children with the disease, and 3) expand the capacity of health care providers to respond to the clinical and psychosocial needs of individuals with the disease.

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