Purpose

The Sickle Cell Disease Association of the Piedmont proposes a continuation of its Newborn Case Management and Follow-up Project to:

1. demonstrate a successful model of comprehensive case management, home teaching and follow-up of 115 (one hundred-fifteen) newborns and children (ages 0-5) with sickle cell disease (SCD) in 6 counties of North Carolina;
2. provide face to face genetic counseling of parents of 200 (two-hundred) newborns with hemoglobinopathy trait;
3. demonstrate the success of SCDAP in partnering with the NC Newborn Screening Program, three comprehensive sickle cell centers, and primary providers in the comprehensive care for infants with SCD; and
4. collaborate with the National Coordinating and Evaluation Center to support data collection and standardization of community-based models.

Challenges

In FY 2002/03, 900 new Southeast Asians resettled in Guilford County, and 52,000 Hispanics now live in the 6 county area. No information is yet available on the incidence of hgb S, however, we noted a significant increase of abnormal hgb in newborns among these ethnic groups. Barriers to serving parents of infants/children of diverse ethnic backgrounds are language and culture. Parents of the pediatric clients (current) speak 13 different languages. We propose hiring interpreters to bridge communications. Based on a study by Telfair, Robinson, et.al. (1999), the parents/guardians of SCDAP’s infant/child clientele were mostly single heads of households and underemployed. These parents face barriers of having low wage jobs, lack of transportation and a lower quality of health care.

Two earlier challenges that have since been resolved were:

1. poor attitudes of hospital staff and slow response of emergency rooms (addressed through the initiation of a Pediatric Task Force at Moses Cone Health Systems); and
2. the State Laboratory’s procedure to mail letters to parents explaining the child’s hgb. trait, thus, parents often fail to seek counseling. This practice has been suspended (in SCDAP’s area) to promote aggressive outreach and counseling.

Goals and Objectives

1. Identify an estimated 25 newborns with SCD in the six counties through notification, confirmation testing and counseling parents;
2. Reduce morbidity and mortality of 50 infants (25 newborns plus an additional 25 infants/children with SCD, ages 0+ to 12 months, from prior grant period) through comprehensive case management, which includes assessment of needs, development of a care coordination plan, referral to primary providers and comprehensive centers, and other resources, and increasing parents’ knowledge/management skills through home teaching sessions;
3. Promote healthy growth and development of 65 children with SCD (ages 1-5 years) within the home/family; addressing physical/ emotional readiness and transitioning to pre-school;
4. Conduct face to face genetic counseling, education and testing to 200 parents of newborns with trait, to assist parents in decision making and understanding of inheritance patterns;
5. Educate area primary care professionals about disease management strategies to improve care for persons with SCD; about recent findings in SCD management and therapies;
6. Share data collected and findings through quarterly and annual reports submitted to the State Program and NCEC.

Methodology

Nurse/Case Managers will conduct:

1. Identification, retesting and follow-up of newborns/infants, provide counseling to parents within the first month of life and complete detail assessment forms on 25 newborns;
2. Provide Case management for 50 newborns/infants (25 newborns plus an additional 25 newborns from prior grant period, ages 0 to 12 mos.); develop a care plan with appropriate referrals to primary care providers, comprehensive centers and other agencies; Conduct follow-up visits and 5 home teaching sessions;
3. Promote continuous growth and development for 65 infants/children, ages 1-5, through bi-monthly Support Group Meetings and continuing education of parents. Educator/counselor will conduct:
4. Genetic counseling with 6 months follow-up to parents of newborns with sickle cell trait; and
5. Educator and Project Director will conduct 1 major workshop for providers on SCD treatment and management, implement in-service trainings at an area hospital, and mail treatment updates to providers.

Evaluation

Data will be collected and analyzed over the 2-year period on newborn/infant/children and families. The Parent/Child Pre and Post Knowledge Questionnaires will be given prior to and at the end of teachings to achieve a score of 85%. Home teaching tests and feedback will assess parents’ knowledge and competence. Nursing notes will indicate compliance with recommended treatment regimen. Genetic counseling of 200 parents of newborns with trait will be assessed by using pre and post knowledge tests (to attain score of 85%), with follow-up tests six months later (w/ 75% retention).

Experience to Date

1. SCDAP was awarded a MCH grant in 2002/03 for newborn screening; its CEO presented on the project’s database development and agency collaborations at the NCEC meeting.
2. This proposal is supported by data collected in a previous project “Pediatric Home Teaching for Parents of Children with SCD”, (Telfair, SCDAP, 1994), funded by Duke Endowment.
3. SCDAP sub-contracted with Duke University Comprehensive Sickle Cell Center- funded by the NHLBI (1987-96).
4. SCDAP received the 1996 Archon Award from Sigma Theta Tau International Honor Society of Nursing for a Collaborative Interdisciplinary Program Model resulting in improved health care delivery.
5. The project director, Marietta Douglas peer reviewed “Guidelines for Management of Acute and Chronic Pain in Sickle Cell Disease”, American Pain Society in 1999. SCDAP is a model that can be duplicated by other community-based agencies in the collaboration and appropriate linkage of parents, local health providers, comprehensive centers and state programs in providing quality care for infants with sickle cell disease.

Text of Annotation

SCDAP proposes a Newborn Case Management and Follow-up Model to demonstrate that community –based sickle cell centers can provide effective case management, medical/health care coordination, and follow-up of newborns/infants with SCD identified through state newborn screening programs. SCDAP uses its home teaching program to educate and improve the skills of parents in caring for their infant. The project also demonstrates that CBOs are excellent avenues for providing outreach and genetic counseling of parents of newborns with hemoglobinopathy variants to assist with informed decision-making.

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