NBS provides an opportunity to educate parents about important issues in raising a child with sickle cell disease. Little work has been published to address issues beyond the basic medical needs of the infant. The work of Dr. David Olds has shown that nursing home visit programs have a lasting impact on maternal functioning, with indicators of improved parenting, such as fewer acute health-care visits, less verified child abuse, better mother-child interactions, and better cognitive development in children high risk mothers, including single, low-income women. Maternal benefits were fewer subsequent pregnancies, increased time between pregnancies, less time on welfare, and fewer arrests. Participation by nurses appears to be a key to the success of such interventions.
During SERGG and other meetings, the feasibility of modifying Olds’ curriculum to sickle cell-specific education modules that can be used by public health nurses, nurse educators, and others who follow up on infants with sickle cell disease detected by NBS will be determined. In addition to the basic health issues these sickle-specific modules would add information on the risks of having affected children, specific information on prevention of pregnancy and sexually transmitted diseases, methods of pain management, acquiring self-efficacy and imparting it to the child, the challenges to helping a child maintain normal intellectual, social, and psychological development in the face of the disease, time management, impact on family dynamics, and responses to economic burdens.
A pilot will be initiated in Southeast Genetics in interested states. Nurses, clinical nurse specialists, social workers, and physicians of the GeorgiaComprehensiveSickleCellCareCenter at GradyHospital will provide resources. They have already been working on such an intervention to be used in the Georgia Newborn Screening Program. The activities will start in Georgia, North Carolina, Alabama, and Florida, based on the potential interest expressed by those areas andbecause of thetwo HRSA-sponsored Sickle Cell Disease Treatment Demonstration Programs.
The transition of children with special health-care needs is an emerging problem resulting from the marked improvement in the survival of children with chronic illnesses due to improved pediatric health care. In genetic diseases, such as sickle cell, cystic fibrosis, and others, preparations for adult life were generally neglected, because there could be little expectation of living into adulthood. A second major problem in the transition of these individuals is finding care by providers who are willing and able to offer the complex health care, economic, social, and psychological support that these patients need.
A number of models for successful transition do exist, based on the concept of the medical home and primary care physicians. This objective will be addressed by evaluating challenges to the implementation of transition programs for individuals with sickle cell disease based on the assessment of family and health provider attitudes and availability of resources. Recent studies by Reiss et al. have highlighted the roles of individual, family, and provider attitudes in achieving successful transition. Telfair et al. also stress the importance of provider attitudes in transition program development.
Recurring, unpredictable episodes of pain are the most distressing and common complication of sickle cell disease. The two programs in the region and the activities of Dr. James Eckman in developing a program for improved pain management for sickle cell patients of all ages through an NIH-funded conference on Sickle Pain Management were highlighted in conjunction with the Annual Meeting of the Sickle Cell Disease Association of America in Dallas in October 2006. This meeting brought together the leaders in sickle cell disease, emergency medicine, hospitals, nursing, and psychology to develop strategies for implementing pain management protocols that have already been developed to treat pain in children and adults with sickle cell disease. The information from this meeting will be presented to the two primary care programs for the development of approaches to pain management that can be used at home, in the primary care clinics, and inpatient settings for the individuals followed in these clinics.
During the first year, protocols will be modified so that they can be integrated practically into primary care settings using the medical home model. During the second and third years, the programs will be piloted and implemented. In the fourth and fifth years, the effectiveness of the programs will be assessed by determining client satisfaction, health resources utilization, and provider satisfaction, and funding will be sought to expand the successful elements to other primary care settings.
Membership
James Eckman, MD, Chair
Joseph Telfair, DrPH, MSW, MPH, Co-Chair
Goals and Objectives
Goal: Improve quality of life for sickle cell patients of all ages by: developing regional programs that use newborn screening to educate patients on the challenges of raising a child with this lifelong, chronic disease; improving the transition from pediatric to adult care; and making maximal use of the primary medical care community to extend services throughout the region.
Objective 1: To develop, pilot, and disseminate educational modules for parents, focusing on the social, economic, and psychological issues related to raising a child with sickle cell disease, so that these patients become well-adjusted, successful children and adults.
Objective 2: Develop, disseminate, and evaluate a regional approach to transitioning individuals from pediatric to adult care by defining barriers among families, health systems, and health-care providers that interfere with efficient and effective functioning as an adult.
Objective 3: Provide a forum for regional dissemination of results from two sickle cell disease collaborative networks funded by the HRSA-sponsored sickle cell disease treatment demonstration program, FY 2006. The Stedman-Wade Health Services in Wade, NC, and Health Services, Inc. in Montgomery, AL, will enhance the coordination of service delivery, health education, testing and genetic counseling, bundling of technical services, training of health professionals, and protocol development via partnerships between HRSA-supported, federally funded primary care clinics, community sickle cell organizations, and tertiary sickle cell comprehensive care centers.
