The Georgia Council on Lupus Education and Awareness plays a role in improving patient outcomes by educating patients and caregivers. The GCLEA even teaches health care providers, especially non-rheumatologists, about the signs of lupus
for early detection and diagnosis before it reaches an extreme level. Systemic Lupus Erythematosus (lupus)
is often diagnosed between the ages of 15 and 44. Given the complexity of the
condition, it can take 3-4 years for a patient to receive a proper diagnosis. Due
to the fact that adolescent onset lupus has been known to result in more
aggressive disease activity and worse outcomes, it is important to track
disease activity among young people and improve patient access to knowledgeable
health care providers. Research indicates that chronic illnesses, such as
lupus, can interrupt the learning environment and lead to more absences and
poorer academic performance.
For five years, the GCLEA in partnership with the Lupus Foundation of America, Georgia Chapter (LFAGA) has received a grant from the National Association of Chronic Disease Directors (NACDD) and the American College of Rheumatology (ACR), with funding from the Centers for Disease Control and Prevention to tackle health disparities. One important way is by educating school nurses in Georgia about lupus. In 2019, the GCLEA and the LFAGA partnered with Emory University School of Medicine Department of Rheumatology and Children’s Healthcare of Atlanta to educate 55 school nurses in Fulton County and DeKalb County, Georgia using ACR materials.
On January 16, 2020 we facilitated a training for Gwinnett County Public School System school nurses, at which twelve nurses were in attendance. On February 17, 2020, we facilitated a training for 57 Atlanta Public School nurses. On August 5, 2020, our team trained over 100 school nurses in the Cobb County School District. The purpose of the training was to provide information and support to school nurses who suspect a student may be living with lupus or assist a student that has been previously diagnosed. Similar programs took place in Florida, through Big Bend Rural Health Network, and Alabama, through the University of Alabama. Our hope is to help students understand and navigate their diagnosis, manage their treatment plans, succeed in school, and to help them transition to adulthood with the support of a knowledgeable school nurse. All 221 Georgia school nurses received continuing nursing education credits and were asked to complete pre-assessments and post assessments. The Georgia Department of Health and Education are expected to expand this project statewide.
In 2018, GCLEA, Big Bend Rural Health Network, NACDD and ACR began the process of developing print materials for school nurses and their students. These materials were developed by pediatric rheumatology fellows from across the country and Dr. Rosalind Ramsey Goldman of Northwestern University. The final versions of these materials have been distributed in both digital and physical form to over 300 school nurses in Georgia, Florida, and Alabama and to pediatric rheumatologists at Children’s Healthcare of Atlanta. The first plan, Guidance to Caring for Students with Lupus (Care Plan), is designed to be used by school health nurses with the guidance and approval of the student’s treating physicians. The second plan, Guidance to Independent Self-Care for Students with Lupus (Transition Plan) is designed to assist students as they transition from dependent to independent living.
In addition to the training and plans, the GCLEA and LFAGA now track the number of students living with lupus in five school districts and we continue to work with the Georgia Department of Public Health and the Georgia Department of Education to expand this entire project statewide.
The project described was supported by Grant number 7 NU58DP007138; CFDA number 93.078, Developing and Disseminating Programs to Build Sustainable Lupus Awareness, Knowledge, Skills and Partnerships. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Department of Health and Human Services, Centers for Disease Control and Prevention.