The American College of Rheumatology (ACR) received federal funds from the U.S. Department of Health and Human Services (HHS), the Centers for Disease Control and Prevention (CDC), for Developing and Disseminating Programs to Build Sustainable Lupus Awareness, Knowledge, Skills and Partnerships (Grant Number 7 NU58DP007138; CFDA number 93.078) with multiple audiences:
• Patients, defined as adults and children diagnosed with lupus or suspected lupus.
• Primary care providers and non-rheumatology providers; and
• Rheumatology healthcare providers.
The campaign has three components:
• Dissemination of immediately available education resources.
• Development of a grassroots awareness campaign; and
• Community-tailored, local-level activities piloted in selected communities in the initial launch and broadened to have national reach in subsequent years of the project.
The third component is addressed by the School Nurse Education and Training Program, which reaches non-rheumatology providers with community-tailored activities.
During the first year of the project (September 2015 – 2016), the National Association of Chronic Disease Directors (NACDD) issued a Request for Proposals (RFP) to develop a statebased Lupus Plan, following the outline of the National Public Health Agenda for Lupus. NACDD funded proposals from the Big Bend Rural Health Network (BBRHN) in Tallahassee, Florida and the Georgia Council on Lupus Education and Awareness (GCLEA) in Atlanta, Georgia. Both grantees convened one- to two-day stakeholder meetings and developed customized plans for each state.
In Year 2 (September 2016 – September 2017), NACDD issued a second RFP to fund a third state’s planning effort; however, no new applicant was funded due to the lack of qualified proposals. Instead, the original funding was re-directed to the two original grantees to expand their educational and awareness work and improve evaluation capacity.
In Year 3 of the grant (September 2017 – September 2018), under the guidance of ACR and NACDD, the Lupus Foundation of America, Georgia (LFA/GA) chapter collaborated with GCLEA and Dr. Sam Lim to conduct an online training program for school nurses. Participating nurses indicated that they enjoyed the program, and further discussions suggested a need for additional tools and resources to support their work with students diagnosed with lupus.
In Year 4 (September 30, 2018 – September 29, 2019), ACR proposed the development and dissemination of resources to students and families through school nurses, as well as the development of a model to support those resources. The work plan led to the Guidance to Caring for Students with Lupus (Care Plan) and a school nurse transition plan titled Guidance to Independent Self Care for Students with Lupus (Transition Plan).
During Year 4, ACR convened a workgroup to develop the educational materials. The ACR Fellows Project connected with Pediatric Rheumatology Program Directors who recommended pediatric rheumatology fellows and a pediatric nurse practitioner to the workgroup. The workgroup also included representatives from the two state grantees – a representative from GLCEA, who was diagnosed with lupus as a child, and the Executive Director of the BBRHN, a former school nurse. Both provided technical assistance and feedback on the resources based on their personal and professional experiences. Dr. Rosalind Ramsey-Goldman, Solovy/Arthritis Research Society Research Professor with the Feinberg School of Medicine, Northwestern University, provided technical assistance and review of materials against the CDC Clear Communication Guide.
The clinicians were directed to take the lead in preparing the training model as well as the guidance documents for the Care and Transition Plans (Plans). All materials underwent multiple reviews by ACR staff, the NACDD consultant, ACR and NACDD Communications teams, and the ACR Pediatric Rheumatology Subcommittee.
The training PowerPoint and both the Care and Transition Plans were piloted in select school districts in Georgia and Florida between 2018 and 2019. In March 2019, 55 school nurses from the DeKalb County School District (DCSD) and Fulton County School (FCS) district attended the School Nurse Education and Training Program. Seven additional school nurses from Florida were trained via webinar. Pediatric rheumatology fellows from Emory University School of Medicine and Children’s Healthcare of Atlanta conducted the trainings. The plans were not finalized at the time of the trainings; thus, participating nurses were given the resources in a draft format and required to return them at the end of the session. Comments on the training evaluations informed the revision and finalization of the Care and Transition Plans. In May 2019, the nurses were provided revised Plans for more deliberate review and comment.
Following final formatting changes and revisions, the training program was finalized and approved by ACR and CDC over the summer. During Year 5 (January 2020 – August 2020), the final documents were used in select school districts in Florida, Georgia, and Alabama to train approximately 332 school nurses and staff through five training sessions. This report focuses on the trainings conducted for school nurses during Year 5 in Florida (Florida School Nurse Conference), Georgia (Atlanta Public Schools, Gwinnett County Public Schools, and Cobb County Schools), and Alabama (Tuscaloosa City Schools). 3
Three elements comprise the evaluation component of this Year 5 project: evaluation of the initial training; evaluation of the Care Plan; and evaluation of the Transition Plan. Participants who attended a state-level training in Florida, trainings in three school districts in Georgia and a local training in Alabama completed a post-assessment questionnaire containing 42 questions organized into four sections. This report includes those findings.
All trainings were conducted between February 7, 2020, and August 6, 2020, at the following locations. It is important to note that the 2019 – 2020 school year had already ended at the time of the Cobb County training.
o Florida School Nurse Conference: 140 nurses trained, 64 questionnaires completed, 61 questionnaires included in the analysis (response rate = 44%)
o Atlanta Public Schools: 57 nurses trained, 31 questionnaires completed, 31 evaluations included in the analysis (response rate = 54%)
o Gwinnett County Public Schools: 14 nurses trained, 14 questionnaires completed, 14 evaluations included in the analysis (response rate = 100%)
o Cobb County Schools: 99 nurses trained, 87 questionnaires completed, 87 evaluations included in the analysis (response rate = 88%)
o Tuscaloosa City Schools: 22 nurses trained, 17 questionnaires completed, 17 evaluations included in the analysis (response rate = 77%)
Overall, 332 nurses and other school staff were trained, and data from 210 evaluation surveys were included in the analysis.
Participants demonstrated basic knowledge and understanding of lupus at post-test. The majority of participants identified the correct answers to questions addressing knowledge of lupus signs and symptoms; however, fewer than half of the respondents (42%, n=88) could correctly identify the potential triggers of lupus flares and the disease manifestations of pediatric lupus patients when compared to adults. A much lower percentage (16%, n=34) correctly responded to the question on the leading cause of mortality in patients with lupus.
Similarly, most participants self-reported increased perceived knowledge, understanding, motivation, and knowledge of other lupus treatment-related areas following the training. The majority of respondents (n=191, 91%) reported being “very satisfied” or “satisfied” with the training provided and indicated that it was clear and easy to follow. Overall, more than 80% (n=176) of all participants indicated that they plan to share the information provided with others in their school district, that they were motivated to apply the information provided to their schools’ work on student health, and that they have a better understanding on how a school nurse can support students with lupus.
Participants indicated a higher intent to use the Care Plan than the Transition Plan in both the current (2019 – 2020) and next (2020 – 2021) school years. A complete list of participants’ comments on the trainings and potential challenges is listed in Section D, under the individual appendix for each training location.
Given the unique role of school healthcare providers, the American College of Rheumatology collaborated with NACDD to create the following resources to assist them as they support students living with lupus, their families, and their healthcare teams.