Purpose

To improve the follow-up rates for newborns with positive screening results for sickle cell disease (SCD) and abnormal hemoglobins requiring a seamless system for notification of parents. The Sickle Cell Disease Association of Illinois will continue to coordinate a family-centered system for follow-up services which includes education, genetic and psycho/socio counseling, support and extended family testing, and case management services.

Challenges

Newborn screening for abnormal hemoglobinopathies has been performed in the state of Illinois since 1989. Until 2002, there was no formal process or protocol to ascertain if the parents of newborns who test positive for sickle cell disease or other abnormal hemoglobins were notified of the newborn screening results, received education and/or counseling. There was also no formal process or protocol to ascertain if the newborn received re-testing, was being followed in a medical home where the primary care physician has up-to-date knowledge regarding the treatment of children with sickle cell disease, sickle cell trait and other abnormal hemoglobins. Illinois newborn hemoglobinopathy screening data for the 1989-2002 period reveals that annually an average of 140 infants test positive for sickle cell disease and 4,246 test positive for sickle cell trait.

Goals and Objectives

1) Monitor and track for one year seventy-five percent (75%) of the referrals received of newborns that tested positive for sickle cell disease (SCD) and other abnormal hemoglobinopathies, 2) Provide counseling, education and referrals that include family genetic screening and other support services for the families and guardians of infants and children found with sickle cell disease for one year. Families that require services for a longer duration and request to remain active with SCDAI will be accommodated and/or evaluated on a case-by case basis, 3) Provide education and training to health professionals and community organizations. We anticipate the realization of these objectives will increase knowledge about treatment of SCD and SCT among families with positive children, as well as an increase in knowledge of the disease and trait among health care providers, community organizations and the general public.

Methodology

At the request of physicians of record, Sickle Cell Disease Association of Illinois will assist in contacting and educating parents of newborns who have a positive disease diagnosis; a newborn screening follow-up and referral form will be received from the physician of record. The form will provide information about the patients’ diagnosis and requested service (s). An information letter will be sent to the mother containing pertinent information regarding the state law, monitoring screening of newborns for sickle cell disease and/or abnormal hemoglobins. A face-to-face contact will then be made between the mother and SCDAI, and/or its partners to develop a follow-up treatment and/or education program. The treatment regimen will assist the family in establishing a medical home. The education component will encompass training workshops for health professionals and genetic/psycho-socio counseling for families.

Evaluation

SCDAI will incorporate both quantitative and qualitative evaluation methods in a comprehensive, ongoing evaluation process. An evaluation plan has been developed that documents project activities, monitors progress, determines outcomes and provides feedback for ongoing program planning. Qualitative evaluation will include the physicians’ survey, parents’ survey and through educational workshop/conference evaluations. Quantitative will include the actual number of referrals received and referred for follow-up services for both sickle cell disease or trait, as well as quantity of people who attended educational sessions.

Experience to Date

Over the past project year, SCDAI has reached approximately 1,000 physicians, 500 nurses, close to 1,500 individuals and over 100 organizations through outreach, and provided case management and counseling and referral service to 84 children and their families. Effective fiscal year 2003, John Stroger Cook County Hospital, Provident Hospital and Mt. Sinai Hospital, have agreed to refer all infants to SCDAI who test positive for sickle cell disease or other abnormal hemoglobinopathies.

Text of Annotation

To avoid missing children who have not received follow-up care after being screened and found positive for sickle cell disease or trait, a seamless system of parental notification is urged. To that end current and consistent protocols for and between physician of record, education and counseling for parents, especially mothers, and the project assistance with our partnering agencies assures improved health care delivery to sickle cell families. Among key materials anticipated are a home study kit for families and a physicians’ reference questionnaire.

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