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 initiate a family-centered system for follow-up services which include 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. However, there is no formal process or protocol to ascertain if the parents of newborns who test positive for sickle cell disease or other abnormal hemoglobins have been notified or educated regarding newborn screening results. Illinois newborn hemoglobinopathy screening data for the 1989-2001 period reveals testing of newborns declined while at the same time screening of newborns with sickle cell disease or trait has gone up.

Goals and Objectives

Provide counseling, education on SCD and abnormal hemoglobins. Referrals that include family case management, genetic screening and other support services for the families and guardians of infants and children with sickle cell disease. Education and training for parents, health professionals and community organizations will be offered. Tracking and monitoring of health services will occur for one year on 75% of receipted referrals of the newborns found, testing positive for sickle cell disease and other abnormal hemoglobinopathies. We anticipate an expanded realization and keener awareness of health service delivery to physicians, sickle cell families and the community at large.

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 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 physicians and genetic/psycho-socio counseling for families.

Evaluation

SCDAI will employ both quantitative and qualitative evaluation tools. Qualitative will include the physicians referral form and through educational workshops increase sickle cell disease knowledge by physicians and sickle cell families. Quantitative will include the actual number of referrals received and referred for follow-up services for both sickle cell disease or trait.

Experience to Date

The Sickle Cell Disease Association of Illinois has throughout its history provided information and referrals to sickle cell disease treatment centers and to health professionals seeking information regarding the treatment and care of patients. Sickle Cell Disease Association of Illinois also maintains copies of “clinical practice guidelines number 6”- Sickle Cell Disease Screening, Diagnosis, Management, and Counseling on Newborns and Infants. Sickle Cell Disease Association of Illinois has also distributed a scriptographic booklet: “Sickle Cell Testing for Newborns- What Every Expecting Parent Should Know.”

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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