Purpose

The primary purpose of the Baby Steps Program as is to improve the quality of care received by infants and young children with sickle cell disease (SCD) and families of infants with hemoglobin traits, ages 0 to 3, by building upon prior program successes and responding to newly identified needs. The SCDFC will collaborate with Children’s Hospital Oakland, Children’s Hospital Los Angeles, and the State of California to: 1) enhance the ability of parents, guardians and other family members to care for and nurture infants and young children with SCD ages 0 to 3 in Los Angeles County, California; 2) improve quality of care for individuals with SCD in Los Angeles County in Southern California, with special focus on the emergency department; and 3) collaborate with the State of California Newborn Screening Program (NBS) in organizing and conducting a meeting to discuss hemoglobin trait follow-up in California.

Challenges

The Baby Steps program is designed to meet needs that are specific to the SCD community in California and that are also consistent with the overall program initiatives. Specifically, it will address the lack of parent/guardian/family knowledge of the basics of SCD needed to adequately care for and advocate for their young children with SCD. The program will also address the discontinuity of care received by SCD patients in the emergency department and in other community care settings. Finally it will address the significant changes to the California NBS Hemoglobin Trait Follow-up program that now limits the availability of in person hemoglobin trait counseling in California.

Goals and Objectives

Goal #1: Increase awareness about the Newborn Screening Program’s hemoglobin trait Follow up services in California.

1. Collaborate in organizing a meeting of consumers; community and sickle cell health care providers; sickle cell counselors; policy makers; and the NBS Program regarding the needs, challenges and successful strategies for providing sickle cell trait follow-up.
2. Increase the knowledge of primary care and social service providers in the community regarding the significance of hemoglobin traits and the importance of family follow-up testing.
3. Increase the knowledge of community members regarding the significance of hemoglobin traits and the importance of family follow-up testing.

Goal #2: Enhance the ability of parents, guardians and other family members to care for and nurture infants and young children with sickle cell disease ages 0 to 3 in Los Angeles County, California.

1. Increase parent/guardian/family knowledge of basic pathophysiology of SCD, warning signs of disease complications, and appropriate health maintenance and preventive care.
2. Broaden parent/guardian/family knowledge of other resources in the community and how to access these resources.
3. Improve patient compliance with well child care and specialty care services, including immunizations and prophylactic penicillin treatment.

Goal #3: Improve quality of care, with special focus on the emergency department, for individuals with sickle cell disease in Los Angeles County in Southern California and Alameda County in Northern California.

1. Identify the key issues affecting quality of care for individuals with SCD, especially in the emergency department, in both Los Angeles and Alameda Counties.
2. Increase the knowledge of health care providers, particularly emergency department staff, regarding SCD and appropriate care paths.
3. Increase parent/guardian/family knowledge of effective coping strategies, with added attention to developing advocacy skills for interacting with emergency department staff.

Methodology

The SCDFC will collaborate with Children’s Hospital Oakland, Children’s Hospital Los Angeles and the California NBS Program to complete the work of this grant. These collaborations will allow the SCDFC to expand upon our successful client education program implemented through the initial funding cycle, create a standardized provider education program for Northern and Southern California and collaborate with the State of California NBS Program regarding the current NBS Hemoglobin Trait Follow-Up Program. Strategies to achieve the goals of this program will include parent education workshops, provider education workshops, an innovative fax back system for emergency departments and a collaboration with the California NBS Program to organize a hemoglobin trait follow-up statewide meeting.

Evaluation

Progress monitoring and outcome evaluation for the proposed program will be conducted by an outside evaluator, Nunn Consulting, Inc.

Experience to Date

The SCDFC has over 45 years of expertise in providing services, particularly education, to individuals with SCD and their families. The 2002-2003 HRSA/MCHB Newborn Follow-Up Program successfully enhanced the continuity of care of 40 infants and young children with SCD ages 0 to 3 in Los Angeles County and enhanced the ability of their parents, guardians and other family members to care for and nurture them. With our primary collaborator, Childrens Hospital Los Angeles, we have developed an educational curriculum for both parents and healthcare providers on the management and care of infants and young children with SCD. The SCDFC maintained its 28 year history as a California State Approved Sickle Cell Education and Counseling Program. For a 10-year period (1991-2000) the SCDFC provided Hemoglobin Trait Follow-up Counseling to parents of infants identified with a hemoglobin trait through the California NBS Program. We have developed an infant care bag for distribution free of charge by the Los Angeles County Comprehensive Sickle Cell Centers to parent of infants with SCD.

Text of Annotation

The purpose of the Baby Steps Program as proposed by the Sickle Cell Disease Foundation of California (SCDFC) is to improve the quality of care received by infants and young children with sickle cell disease and hemoglobin traits, ages 0 to 3, by building upon prior program successes and responding to newly identified needs. During this program, the SCDFC will work collaboratively with Children’s Hospital Oakland, Children’s Hospital Los Angeles, and the State of California to 1) enhance the ability of parents, guardians and other family members to care for and nurture infants and young children with sickle cell disease ages 0 to 3 in Los Angeles County, California, 2) improve quality of care, with special focus on the emergency department, for individuals with sickle cell disease in Los Angeles County in Southern California and Alameda County in Northern California and 3) collaborate with the California Newborn Screening Program in organizing a statewide meeting to discuss hemoglobin trait follow-up services. Strategies to achieve these goals will include a needs assessment, parent education workshops, provider education workshops, an innovative fax back system for emergency departments and the collaboration with the California Newborn Screening Program on a hemoglobin trait follow-up statewide meeting.

Materials developed will include a SCD patient information card, SCD warning signs & symptoms fact sheet, a SCD fax back program poster and SCD care paths/protocols for emergency departments.

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