Purpose

The Northwest Sickle Cell Collaborative (NWSCC) will partner with family, newborn screening, provider and community stakeholders to enhance existing resources and infrastructure. The goal is a single, statewide, seamless system that enhances follow-up, delivery of care, and coordination of services for families affected by sickle cell anemia.

Goals and Objectives

The first goal is to improve the tracking, coordination of services and monitoring of care and outcomes of infants and children with significant sickle hemoglobinopathies through out Washington State.
I. Design and implement a computerized Sickle Cell Registry and information tracking system by 1/06.
2. Enroll infants and children in Washington State identified with Sickle Cell Disease. By 4/06 90% of newly diagnosed SCD children based on NBS will be entered. All existing SCD patients at OBCC and MBCH will be enrolled by 6/06.
3. Create a Northwest Sickle Cell Collaborative (NWSCC) web site by 11/05.

The second goal is to reduce barriers to SCD management services by empowering patients and families, improving sub-specialty care and increasing services for sickle cell earners.
I. Integrate a model self-care-advocacy health skills program into OBCC's Sickle
Cell Program by 6/06.
2. Increase the identification and counseling of families with Sickle Cell Trait by offering screening and counseling to all parents of infants identified by newborn state screening by 9/05.
3. Create a personalized patient care handbook that provides a complete description of individual patient's medical management needs with special emphasis on appropriate pain management. Complete handbook design by 2/06.

The third goal is to improve scientific communication and exchange between specialists and improve access to specialized SCD expertise, support services and educational opportunities for healthcare providers.
1. Increase interaction, communication and collaboration between the 4 pediatric hematology centers in the state managing SCD (OBCC, MBCH, Group Health, Sacred Heart), to increase our shared experience with SCD utilizing existing, while developing new infrastructure.
2. Compose an easily accessible, multi-disciplinary SCD outreach education team able to provide a variety of resources including provider and family based educational materials and resources, consultation and education by phone, internet and in person. .

The fourth goal is to enhance integration of Sickle Cell Disease services into primary care as well as chronic disease management strategies. The objective is to have all persons in the NWSCC registry will have a medical home by 1/06.

The fifth goal is to promote the engagement, knowledge and self-care-advocacy among families and communities impacted by Sickle Cell Disease and Trait.
1. Enhance the existing sickle cell support groups and other community stakeholders for collaboration, networking and critical programmatic input with bi-yearly meetings starting 12/05.
2. Establish (by 12/05) a cross-cultural advisory group of parents, primary care providers, community representatives and other concerned parties to review program progress and enhancement plans, and to make recommendations.
3. Support four community based outreach projects per year starting 10/05. Hire a family or community member to consult on the effectiveness of program elements by 12/05.

Methodology

Goal 1 will be achieved by establishing a statewide sickle cell coordination center. Working with stakeholders and the national center, a Washington State registry of patients affected by sickle cell anemia (SCA) will be established. Coordinators will be responsible for assisting in the seamless transfer of information and coordination of patient care. The center will host a website dedicated to providing patients and providers with up-to-date, content-reviewed, resources.
Goal 2 will be achieved by developing family oriented workshops and personalized education tools to empower families affected by SCA. Focus groups and community advisors will be enlisted. In addition we will increase efforts to educate providers and families about sickle cell trait and provide testing and counseling.
Goal 3 will be achieved by establishing a group of SCA providers to enhance communication and knowledge amongst us as well as the national SCA community. A multidisciplinary outreach team will be provide educational resources to any interested provider in the state in person, by mail or by phone.
Goal 4 will be achieved by utilizing the coordination center and resources such as the CHILD profile system to track and assure each child with SCA has a medical home that is assuring optimal primary and specialty care.
Goal 5 will be achieved by increasing community involvement by supporting existing community groups, establishing a cross-cultural advisory body, and increasing community education.

Coordination

Metropolitan Sickle Cell Task Force: Family/community stakeholder engagement; dissemination of information and education, African American Community Health Network: SCD awareness activities; information and referral; Mary Bridge Children's Hospital: Coordination of SCD resources and family support activities; WA State Genetics: Identification of newborns with SCD/Trait; linkages with regional genetics programs; WA State MCH: Linkages with statewide CSHCN network

Evaluation

Critical process elements like existence of a registry, existence of a web site, national collaborative membership, self care skills materials, outreach visits and team meetings are all detailed in the work plan. Measures of impact on program services will be obtained through the registry. Data will describe the extent of and timeliness of important preventive services. Satisfaction feedback from providers and parents will provide qualitative elements of impact.

Key Words

Sickle Cell Disease; Family Centered Health Care Cultural Sensitivity; Screening
Children with special health care needs

Annotation

The Northwest Sickle Cell Collaborative will improve the tracking, coordination of services and monitoring of care and outcomes of infants and children with significant sickle hemoglobinopathies through out Washington State, reduce barriers to SCD management services by empowering patients and families, improving sub-specialty care and increasing services for sickle cell carriers, enhance integration of Sickle Cell Disease services into primary care, and promote the engagement, knowledge and self-care advocacy among families and communities impacted by Sickle Cell Disease and Trait through the development of a statewide registry and network of providers and community stakeholders.

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Copyright © 2003, Sickle Cell Disease Association of America