Purpose

The Southeast Florida Sickle Cell Partnership will strengthen education, counseling and coordination of care for children with sickle cell disease, sickle cell trait and their families, by providing additional resources for follow-up of infants identified through Florida's Newborn Screening Program and building on the successful collaborative approaches developed during implementation.

Challenges

There are several challenges to assuring that children and the families of children with sickle cell disease and traits are provided with adequate, comprehensive and culturally competent information and counseling.

• The regional Sickle Cell Disease Centers for Palm Beach, Martin, St. Lucie, Indian River and Okeechobee counties are located at Joe DiMaggio Children's Hospital and Chris Evert Children's Hospital, both in Broward County. Referrals by the Metabolic Registry to the center are the highest in the state: in 2002 123 newborns were referred. This compares with 83 referrals for the Miami area, 37 for Tampa and 31 for the Orlando area.

• The population is culturally diverse, including a large Creole speaking Haitian community. It has been difficult for the sickle cell coordinator at the center to follow-up on all referrals in a timely manner, and she often has to rely on numerous community based agencies to assist to locating families. These agencies do not always have the expertise in sickle cell counseling and education to provide families with appropriate information when they make initial contact.

• Families are notified that a child has been identified as being a carrier of one of the sickle cell traits through the Florida Newborn Screening Program by letter sent by program headquarters that advises the family to contact the local Sickle Cell Foundation for further information. There is ample evidence that families do not respond well to this letter, and the partnership has been sending letters with specific local Sickle Cell Foundation contact information to families of newborns with the trait, through the local Children's Medical Services office. One of the barriers has been client confidentiality, which does not allow release of patient specific information to the community based organization. The partnership is working with Department of Health headquarters to allow release of demographic information to the Sickle Cell Foundation, in order to facilitate more active direct outreach to the identified population.

Goals and Objectives

1. Provide support to infants and children with sickle cell disease or sickle trait and their families that includes providing a seamless system for early detection, confirmatory testing, counseling and treatment and assuring that children with sickle cell disease or trait have medical home access for proper management, preventive health care and treatment.

2. Identify and address current and potential ethno-cultural barriers which affect the ability of parent/caregiver to understand and follow through with treatment plan. Provide culturally competent support, education and counseling to families.

3. Provide innovative educational programs for health care providers and consumers.

4. Strengthen partnership with key agencies and health care providers serving newborns and children with sickle cell disease and trait. Establish new partnerships to promote accessible services.

Methodology

A Registered Nurse Specialist at Children's Medical Services will work directly with the infant screening coordinator from the referral centers, following up on referrals of newborns in Palm Beach, Martin, St.Lucie, Indian River and Okeechobee counties. This nurse will provide initial contact and counseling, assure that confirmatory testing is done and treatment initiated, as well as coordinate care for children with sickle cell disease. There are approximately 45 new referrals annually in this area. Letters will be sent by the partnership to families whose children are identified with sickle cell trait, providing them with information about who to contact at the Sickle Cell Foundation for counseling. There are approximately 1,000 newborns identified annually in this region with one of the traits. Follow-up contact will be made to encourage families to obtain counseling. The partnership will also provide information to all pediatricians and family practitioners in the area about resources available for children and families who are identified sickle cell disease or trait.

Evaluation

• # of children in treatment by 4 months of age
• # of children staffed in interdisciplinary team meetings
• # of educational programs provided to parents
• # of children enrolled in primary care (medical home)
• # of children referred to the Sickle Cell Foundation
• # of families counseled by the Sickle Cell Foundation
• Family reports of confidence in understanding and managing the care of their child, based on Family Satisfaction Surveys.

Experience to Date

1. Partners have established bi-weekly interdisciplinary team meetings and videoconferences to address patient identification and follow-up, program progress and opportunities for improvement.

2. Confirmatory testing for newborns with sickle cell disease is being completed in 2-4 months.

3. Contact with Sickle Cell Foundation for counseling families of newborns with sickle cell trait has increased from 1-2 per year as result of Newborn Screening Program to 10% of children identified (approximately 100).

4. Children with sickle cell disease are enrolled in the CMS Network and are assured a medical home, family centered care coordination and assistance with transitions. Specialty care is provided in multidisciplinary hematology clinic at St. Mary’s Hospital, with board-certified hematologist, CMS clinic and care coordinators, case manager from Sickle Cell Foundation and Infant Screening Coordinator from regional Sickle Cell Center.

5. Children with sickle cell trait and their families receive education, counseling and support from case managers at the Sickle Cell Foundation. Guidance includes the importance of primary and preventive health care.

Text of Annotation

This project will provide counseling, education and support services for newborns who test positive for sickle cell disease or trait and their families, in a large geographic area that is difficult to serve because of the number of referrals, size and cultural composition. Nurse case managers and sickle cell counselors in the local community will provide follow-up and services in coordination with the regional sickle cell center. Goals are to improve timeliness of initial contact and implementation of treatment for children with sickle cell disease, and education and counseling for families of children with sickle cell traits.

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