Purpose

We propose a one year project for statewide outreach and education of community health care professionals to provide support, counseling, and education to patients and families of infants screened positive for sickle cell disease and other hemoglobinopathies.

Challenges

The primary rationale for sickle cell newborn screening is to provide appropriate intervention (penicillin prophylaxis and education) to reduce mortality. A secondary objective is to identify and educate families with sickle cell trait and other hemoglobinopathies. Among the 80,000 Massachusetts births, all newborns with markers of sickle cell disease (SS) are identified, reported to a primary care provider and tracked to assure an initial appointment with a hematologist. Whether all families keep this appointment has not been formally tracked. In addition though Massachusetts also reports all identifications of sickle (S) trait by notification of pediatricians, and Massachusetts universally offers in-home counseling to all families of babies identified with S trait directly to families, only one third of carrier families thus identified participate in the Screening Program’s genetic counseling services. Communication among stakeholders could be optimized with better education of community providers.

Goals and Objectives

1. Develop curriculum and optimize printed educational materials for interpretation of newborn hemoglobinopathy screening (Goal II) and sickle cell disease management (Goal III). This will include
   1. materials for community health center nurses, health educators;
   2. materials for pediatricians, family practitioners;
   3. materials for community support groups.
2. Provide training to community providers and support groups for interpretation of hemoglobinopathy newborn screening results, and for counseling in sickle cell trait.
3. Provide training for community providers (with a focus on primary care physicians) and support groups on treatment of sickle cell disease and related hemoglobinopathies.
4. Formalize a feedback system from hematology providers statewide to newborn screening for patients identified with sickle hemoglobinopathies and related disorders.

Methodology

Overall strategy: The project will be coordinated by the New England Pediatric Sickle Cell Consortium (NEPSCC), which represents all of the pediatric hematology centers in the state. We propose a strategy to “Educate the Educators,” in order to maximize reach to sickle cell carriers and families at risk. We will therefore aim to reach Community Health Center staff (nurses, educators, facilitators in Pediatrics, Family Medicine, Obstetrics) throughout the state. Education for providers and support groups will be in small group settings and in regional conferences.

Goal I. We will adapt currently available family information from the New England Newborn Screening program, and develop a brief curriculum to present this information to providers. Materials and approaches will be shared with other grantees, and will be tailored during the project to be consistent with planned national guidelines under development.

Goal II. To reach the community health center providers, will contact each of the 49 members of the Mass. League of Community Health Centers, and offer to provide conferences and educational materials. Special emphasis will be placed on understanding common results obtained in the newborn screening program. We anticipate conferences to include pediatrics, family medicine, and OB/GYN at each.

Goal III. Educational materials for Sickle cell disease treatment will be based on treatment pathways from the NEPSCC and from national treatment guidelines. Examples include pain treatment, management of patients with sickle cell disease and fever, prevention of stroke, use of hydroxyurea.

Goal IV. We will implement a strategy, consistent with applicable confidentiality standards, for the six centers of NEPSCC to notify Newborn screening when infants with sickle cell anemia identified by newborn screen present for counseling and treatment.

Evaluation

Because this is a one-year-only project, we propose focused evaluation in three areas only.

1. Extent of the outreach efforts: what fraction of the community health centers were approached? what fraction of those approached participated in the training activities?
2. Effectiveness of outreach training sessions. A survey of pre- and post-training knowledge and attitudes will be administered to health center staff members who attend the training programs.
3. Feedback from Sickle Cell treatment centers to newborn screening program. During the one year project period, we will assess what fraction of patients identified with sickle cell disease (including Hb SS, SC, SD, SO, and S/beta thalassemia) present for care at NEPSCC pediatric hematology sites as recommended.

Experience to Date

The applicants of this proposal have substantial experience in key aspects.

• The “Boston Center for Genetic Blood Diseases,” funded by MCHB and led by Project Director Neufeld, established links with a community provider (Lowell Comm. Health Center) and national support groups (Cooley’s Anemia Foundation) for care, and education in thalassemia.
• The New England Pediatric Sickle Cell Consortium has developed several ‘pathways’ for care of specific medical issues in sickle cell disease, and provides care for more than 500 sickle cell patients.
• The Mass. League of Community Health Centers represents 49 centers across the state, including 26 in Boston. The 104 sites of the member organizations provide primary care for significant numbers of sickle trait carriers, and sickle cell anemia patients.
• The New England Newborn Screening Program of performs over 80,000 newborn hemoglobinopathy screens in the state each year, identifying approximately 30 patients with sickle hemoglobinopathies, and several hundred individuals with S trait annually.
• Community outreach collaborators STRIVE, Sickle Cell Cooperative, and the Springfield Sickle Cell Disease Chapter, Inc, provide support to patients and families with sickle cell disease.

Text of Annotation

The purpose of this project is to unite the providers and community resources involved in newborn screening and care for patients and families with sickle hemoglobinopathies. The New England Pediatric Sickle Cell Consortium will coordinate outreach, education and evaluation. NEPSCC will use an “educate the educator” strategy, and offer the curriculum (as conferences, outreach teaching sessions, and written materials) to members of the Mass. League of Community Health Centers, community pediatricians, and support groups in the community. With the Newborn Screening Program, we will develop a feedback system to allow the public health system to assess the fraction of infants identified with sickle cell disease who achieve the recommended goal of seeking care with comprehensive sickle cell treatment centers.

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