The Journal of School Nursing2024, Vol. 40(4) 452–459© The Author(s) 2022Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/10598405221129553journals.sagepub.com/home/jsn
Abstract
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is an autoimmune disorder associated with sudden onset of behavior changes. The prevalence of PANDAS is increasing in schools and interdisciplinary collaboration, knowledge, and the use of referrals to the school nurse are important for supporting students. This project sought to provide education on PANDAS to the interdisciplinary school team and implement a referral process for students exhibiting behavior changes. A self-directed online educational intervention was employed. A pretest-posttest design was utilized to assess knowledge before, immediately after, and six-weeks after the educational intervention. A referral log was implemented to track the number of referrals to the school nurse. The final sample size included 19 participants. Mean scores increased from pretest to posttest, and the implementation of a referral system produced 12 new school nurse referrals. Further strategies are needed to enhance interdisciplinary collaboration and support students experiencing health-related issues.
Keywordsschool nurse, interdisciplinary collaboration, PANDAS, referrals, Whole School, Whole Community, and Whole Child model
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) has been increasing in diagnosis for school aged children and is a condition in which children exhibit neurological and psychiatric symptoms. These symptoms are often sudden and include behaviors such as obsessions and tics (Genetic and Rare Diseases [GARD], n.d.; Silverman et al., 2019). PANDAS has been shown to be linked to a streptococcus infection. PANDAS is diagnosed between the age of 3 years old and puberty, with an average age of onset/diagnosis of 6–7 years old (Alliance to Solve PANS & Immune-Related Encephalopathies [ASPIRE], 2021; GARD, n.d.; National Institute of Mental Health [NIMH], 2019). As such, children diagnosed with PANDAS are school-aged and in elementary school onset.
Although PANDAS was identified as early as the 1980s (Swedo et al., 1989), and subsequently recognized by the NIMH as a disorder in 1998 (Swedo et al., 1998), it has often been overlooked as a potential cause for a child’s obsessive and other behavioral concerns seen in school. It is estimated that one in 200 children have PANDAS (ASPIRE, 2021; NIMH, 2019). However, PANDAS is a controversial diagnosis and is often misdiagnosed (Macerollo & Martino, 2013; Pupillo, 2017; Wilbur et al., 2019). With no definitive laboratory studies to diagnose PANDAS, the emphasis for healthcare workers, including nurses, is to focus on symptom identification and the management of bacterial infections and tic disorders. Due to the underdiagnosing of the condition, PANDAS is a low volume, high risk condition that may present in school-age children and be seen in the school setting.
School nurses in one district identified an increase in the number of students being diagnosed with PANDAS. One school nurse conducted an organizational assessment that revealed staff, representing a variety of disciplines, were unfamiliar with PANDAS. Awareness of the importance of utilizing school nurses to support students who may be experiencing this unique condition was also lacking. Further, the school nurse noted limitations in the provision of care for students experiencing PANDAS as no individualized healthcare plan (IHP) existed at the district nor in the standard IHP resource book commonly utilized by school nurses (Will et al., 2017).
An IHP is an essential tool that school nurses use to guide the management of health-related conditions experienced by students in the school setting. A standard of practice at the school district is that the IHP is needed once a medical diagnosis is received, and the diagnosis guides the student goals, outcomes, and nursing interventions implemented by the school nurse (National Association of School Nurses [NASN], 2020). Given that school nursing is a specialty that encourages health, development, and improved academic success of students (American Nurses Association [ANA] & NASN, 2022; NASN, 2016b), the school nurse determined there was a need to improve awareness of PANDAS among the school’s interdisciplinary team members and implement a process that strengthens collaboration and enhances the utilization of school nurses.
A search of the literature on school nursing, PANDAS, and interdisciplinary collaboration revealed that school nurses function on the Whole School, Whole Community, and Whole Child (WSCC) model foundation (NASN, 2017). The WSCC concept provides opportunities to enhance the outcomes of students (NASN, 2017). An interdisciplinary approach to a student’s care is critical in improving not only the health outcomes, but the academic success of a student as well (Johnson, 2017; Kocoglu & Emiroglu, 2017; NASN, n.d., 2017; Yoder, 2020). The interdisciplinary team centers on the student and includes individuals who work directly and indirectly with the student. These individuals can include the principal, teachers, guidance counselors, school psychologists, educational assistants (or classroom aides), and the school nurse. Teachers may consult guidance counselors for student concerns related to classroom behaviors, and concerns regarding mental health and academic progress (American School Counselor Association [ASCA], 2020; National Association of School Psychologists [NASP], 2021). Principals are often consulted for behaviors, especially those that negatively affect the school learning environment. Interdisciplinary collaboration is important for students who present to school with chronic conditions because these students require additional care beyond that of the learning environment. The collaboration between the school nurse, guidance counselor, psychologists, and principals is integral for the academic success and health of students (Fleming & Willgerodt, 2017; Stone & Charles, 2018; Tuttle et al., 2018).
Doran (2015) discussed the impact that PANDAS has in the educational setting. Caring for students with PANDAS requires knowledge of the condition and identification of behaviors consistent with PANDAS. Additionally, it is important that school staff have a process for referring students to the school nurse so that timely and appropriate assessments can be made and additional referrals to healthcare providers can be initiated. The teacher may identify a disruptive behavior and consult with the counselor, psychologist, or principal regarding the behaviors, especially when the learning environment is affected. The counselor, psychologist, or principal would then refer the student to the school nurse for further health evaluation and assessment. Although PANDAS is a low volume, high risk condition, the prevalence of PANDAS is increasing among students (ASPIRE, 2021). Therefore, it is essential to use strategies that encourage interdisciplinary collaboration, enhance knowledge of newer health-related conditions, and encourage utilization of school resources, like school nurses.
The purpose of this project was to implement a professional development activity designed to improve the school nurses’, counselors’, psychologists’, and principals’ knowledge regarding PANDAS. Further, this project sought to implement a referral process to the school nurse related to PANDAS concerns. Knowles’ (1975, 1979, 1985) theory of adult learning was used to guide the development and implementation of the education session, which incorporated visual, auditory, and kinesthetic formats. Rogers’ Diffusion of Innovations Theory guided the implementation of the referral process and focused on five steps: knowledge, persuasion, decision, implementation, and confirmation (Wagner, 2018). Lastly, the development and reporting of this quality improvement project followed the SQUIRE 2.0 guidelines (Squire, 2015).
A pretest-posttest design with convenience sampling was utilized for this quality improvement (QI) project to measure knowledge acquisition and retention. The six-week follow-up posttest was identical to the posttest questions employed immediately after the intervention. The pre and posttest tool consisted of ten questions that were a combination of multiple choice and true/false statements related to PANDAS. The pretest-posttest was developed by the project lead and reviewed by graduate-level nursing education students who have received education on evaluation and testing methodologies. The pretest-posttest was also reviewed by individuals from the ASPIRE group to ensure content validity. ASPIRE is a group of individuals with expertise in PANDAS and other encephalopathies. Dr. Susan Swedo, who is credited with identifying PANDAS, is a founding member of ASPIRE. The mission and goal of ASPIRE is to educate so that children can receive the proper diagnosis, care, and treatment without delay or discrimination (ASPIRE, 2022). The initial pretest and six-week posttest were completed via Qualtrics survey format.
The project lead developed a referral log to measure student referrals to the school nurse. The referrals were tracked using a Google sheet stored on a secure, yet shareable drive accessible to only school nurses. The project lead reminded the school nurses to complete the referral log after the education was completed and at the monthly school nurse meetings. The Google sheet was used to record the following information: (1) Referral date by school counselors, school psychologists, or principals, (2) Age of student, (3) Grade of student, (4) Gender of student, (5) Job title of referrer, (6) Specific behaviors exhibited by student consistent with those associated with PANDAS (visualized by either school counselors, school psychologists, principals, or school nurse), and (7) Referral to physician Y/N.
Ethical considerations for this project were based on those outlined by Moran et al. (2020). Approval was obtained by the Millersville University of Pennsylvania Institutional Review Board, and a letter of support was obtained from the superintendent of the school district. A learning management system (LMS) was used to deliver project content (i.e., information on project aims and participant roles) and for the education session. In addition, informed consent was obtained from each participant at the beginning of the education session in the LMS and there was implied consent with continuation of the session. Participants were offered Continuing Education credits, for completion of the education session. Continuing Education credits are required for education specialists to continue certification. Participants who desired the Continuing Education credits entered their information into the LMS.
This project took place in a suburban school district in Central Pennsylvania consisting of over 10,000 students. There is a minimum of one registered nurse (RN), licensed practical nurse (LPN), or certified school nurse (CSN) in each building. A CSN in Pennsylvania is a nurse who holds a registered nurse license and has completed an approved School Nurse PK-12 Certificate program (Pennsylvania Department of Education [PDE], 2022). The School Nurse PK-12 Certificate satisfies the educational requirements for the School Nurse Certificate issued by PDE. At the time of the project, five of the CSNs each covered one LPN or RN. The CSN to student ratio averaged one CSN per 1,261 students. The school district hires school counselors and school psychologists for both elementary and secondary schools. There is one principal for each elementary building, two per middle school building, and the high school has one overarching principal, two associate principals, and one principal per grade level.
The participants for this scholarly project were recruited through a convenience sample and included district-wide school nurses (CSN, RN, and LPN), counselors, psychologists, and principals. The estimated sample size for this project included 13 school nurses, 22 school counselors, 10 school psychologists, and 19 principals totaling 64 potential participants. Inclusion criteria for school staff included employment by the school district and inclusion criteria for school nurses included employment by the school district and having a nursing license (LPN or RN). Participants who did not consent, or who did not complete pretest and/or posttest questions, or who were unable to be matched between the initial pre and posttest were eliminated from all data analysis. As a result, data from 19 participants were analyzed for this project. The majority of participants were nurses and counselors.
An educational program, approximately one hour in length (Appendix A in Supplementary Material), was designed and implemented to improve the participant’s knowledge of PANDAS and to increase the number of referrals to the school nurse by school counselors, psychologists, and principals of students exhibiting behaviors consistent with PANDAS. The educational program focused on PANDAS information and interdisciplinary collaboration to care for the student. Content for the educational program was developed from recent articles on the condition as well as information from ASPIRE, experts on PANDAS. Education was also provided to the school nurses regarding the use of the IHP specific for students with PANDAS. This IHP information was adapted from the ASPIRE group. Information regarding the importance of referrals to the school nurse was included and a referral log was developed to track referrals to the school nurse.
The participants were sent an email with an introductory letter explaining the purpose of the project, inclusion criteria, and procedure to maintain confidentiality. The letter also explained the Continuing Education credits, needed to maintain certification, that were awarded at the conclusion of the educational program.
The educational program was developed and uploaded into the LMS that the school district employs to administer professional development courses at the district level. There were detailed instructions in the letter explaining the process for enrolling in the LMS course. This is consistent with the current procedure for enrolling in courses in the district. The course had a code that the participants entered in the LMS at the join a course section. This loaded the educational program. Upon entering the LMS, participants could view the introduction letter again. Prior to taking the pretest, there was a statement that said, “by proceeding with the education module, consent is assumed”. If participants proceeded with the LMS application, they were taken to a screen where they completed the demographic data survey and pretest. Qualtrics, a web-based software company, was used to collect the demographic data survey, pretest, and subsequent posttest data. There was a link embedded in the LMS to guide the participant to the demographic survey and pretest. Upon completion of the pretest, participants completed the education module by working through the required sections. The sections were ordered based on content. The participants could go back to a section to review the information. The module included slides with voiceover lecture, videos, and interactive check points. Once the education session was over, participants were guided to complete the posttest. Again, the Qualtrics link was embedded in the module and guided the participant to the posttest. The module concluded with a thank you statement and a reminder that an email will be sent to complete a final posttest in six weeks. To assess knowledge retention, the participants were asked to complete the same posttest again at six weeks after the initial module completion. A link to the six-week posttest was sent via email. The entire project was completed in ten weeks.
Project data were analyzed using IBM SPSS Statistics (Version 27) software. Initially, descriptive statistics (means and frequencies) were used to obtain information on the project sample. Inferential statistics (Paired t-test) was used to compute and compare the initial pre- and posttest scores to determine the impact of the education session on knowledge acquisition. A proportions test was also used to determine the percentage of scores that improved from the education intervention. Due to an inability to match the six-week follow-up data to the initial pretest/posttest data, inferential statistics were unable to be computed. Instead, mean scores for the initial pre- and posttests and six-week posttests were computed and compared. The significance level for all analyses was set at p <.05.
Originally, 24 individuals began the education. This education was online and self-paced. One participant did not give consent and one did not complete the initial pretest and posttest. Three of the participants could not be matched from initial pretest to posttest. After exclusion of these participants, the final sample size for this project was 19.
Demographic data was collected during the pretest phase of the project. Due to an unanticipated technical issue, the demographic data was not re-collected at the six-week follow-up. Of the participants, five (26.3%) were CSNs, eight (42.1%) were school counselors, one (5.3%) was a principal, two (10.5%) were school psychologists, and three (15.8%) were RNs working in a school health office. See Table 1 for a complete list of demographic information.
To assess knowledge acquisition, the mean differences between the initial pretest and posttest scores were compared using a paired t hypothesis test. While the t-test showed a significant difference on average of the mean initial pretest and posttest scores (t(18) = 5.55, p < .001), the mean increase in scores was 1.3 points, which reveals limited practical significance.
A proportions test was used to examine the percentage of scores that improved following the intervention. This test included a sample size of 16. Three of the 19 participants scored a 10/10 on the pretest, meaning they were at the highest score pre-intervention. As such, these participants were not included in the confidence interval estimate because their post-intervention scores would not demonstrate further improvement. Fourteen of the 16 participants increased their score on the initial pretest. The sample proportion (p) for this group was .875 (87.5%) with an increased posttest score. A 95% confidence interval for the population proportion is (61.7%, 98.4%). The posttest scores increased an average of 1.5 points.
As previously mentioned, demographic data was not collected again prior to the completion of the six-week follow-up posttest. Therefore, the data from the six-week posttest was not able to be matched to the pretest and posttest and inferential statistical analysis was not able to be performed on the data. However, there were 17 participants that completed the six-week follow-up posttest and mean scores for these tests were computed. The mean score of the six-week posttest was 9.176, while the mean score for the initial pretest was 8.125 and the mean score for the initial posttest was 9.625. These results show that mean test scores increased after the education intervention; thereby suggesting that participants were able to increase and retain knowledge related to PANDAS content.
An increase in referrals was measured by implementing and using a referral log and recording the number of new referrals obtained during the implementation phase of the project. The project was implemented over a ten-week period. Prior to the project, there was not a strategy in place for tracking referrals. As such, the baseline number of referrals was unknown. At the end of the data collection period there were a total of 12 referrals to the school nurse. Of the 12 referrals, four were referred to the school nurse from the school counselor. The other eight were noted as other, which meant they were referred by school professionals besides school counselors, psychologists, or principals. Of the 12 referrals, seven were elementary school children (ages 5–10) and five were middle school children (ages 11–13). This is consistent with the age of symptom onset being 3–12 years old. Six of the 12 students who were originally referred to the school nurse were subsequently referred to a physician for further evaluation. Based on the school nurse’s assessment, the other six children were not referred for further treatment.
The goals of this project were to increase knowledge of PANDAS among school nurses, counselors, psychologists, and principals and to increase referrals of students exhibiting behaviors consistent with PANDAS to the school nurse. The results suggest the education intervention was effective as there were significant differences in initial pretest and posttest mean scores and the initial and six-week posttest mean scores increased from the pretest. Additionally, the results suggest the implementation of a referral process was effective as there was now documentation of school nurse referrals. This project is consistent with other studies that identified the implementation of an education session assists in increasing knowledge (Austin et al., 2010; Decelle, 2016; Gormley, 2019; Le Fouler et al., 2021; Nguyen et al., 2016; Priya et al., 2020; Sigsworth, 2020; Walters et al., 2015). However, the current findings suggest limited practical significance, future projects are needed to confirm and extend the current findings.
Doran (2015) suggested that the school team, including the counselors, psychologists, and principals along with the school nurses, need to be aware of the behaviors that are consistent with a PANDAS diagnosis. This interdisciplinary collaboration evaluates and assesses the students for identification of possible causes of disruptive behaviors. Literature supports the continued need for collaboration among school nurses, counselors, psychologists, and principals as identifying these behaviors and knowing when to refer to the school nurse is instrumental in providing optimal care (American Association of Colleges of Nursing [AACN], 2021; Fleming & Willgerodt, 2017; Johnson, 2017; Kocoglu & Emiroglu, 2017; NASN, n.d., 2016a, 2017; Stone & Charles, 2018; Tuttle et al., 2018; Yoder, 2020).
This project has implications for school nursing. The results of this project suggest that an interdisciplinary education program assisted school staff to increase their knowledge on PANDAS. An increase in knowledge about PANDAS may assist school staff to identify students who may be exhibiting PANDAS behaviors and better utilize district resources, including school nurses, who can assess and care for this student population. This interdisciplinary collaboration amongst school nurses, counselors, psychologists, and principals enhances the learning environment and helps strengthen the success of students at school (Johnson, 2017; Kocoglu & Emiroglu, 2017; NASN, n.d., 2017; Yoder, 2020). Students with chronic health conditions and concerning symptoms that necessitate primary or specialty health care referrals benefit from school nurse adoption of systematic referral documentation strategies.
IHP Development. As previously discussed, an IHP is an important tool for school nurses when caring for students diagnosed with PANDAS. At this time, there is not a standard IHP for PANDAS in the school district or in the school nursing practice literature. This project identified the need for IHP development for PANDAS. School nurses can use an IHP to help coordinate care for a student once a PANDAS diagnosis has been received, in turn, leading to increased collaboration amongst school nurses, counselors, principals, and psychologists. Furthermore, the collaboration in using an IHP would extend beyond the walls of the classroom and into the home and health provider’s office. Future projects should assess the usefulness of implementing an IHP related to PANDAS and student outcomes.
Findings from this project should be reviewed with caution as limitations exist. This project included a small sample size that represented one school district. During implementation, the global COVID-19 pandemic was still in the heightened phase which may or may not have influenced the participation rate.
Further, technology limitations were noted after implementation had been established. A programming glitch did not allow the linking of the demographic data to the six-week posttest data.
It is recommended that this project be repeated on a larger scale. This project was developed with a narrow scope and focused only on specific interdisciplinary team members. Given that teachers and other non-teaching staff also are significant members of the interdisciplinary team, they should be incorporated in future projects related to PANDAS and health-related conditions. Incorporating the teachers and other non-teaching staff may assist in further identifying students who need to be referred to the school nurse for symptoms not necessarily just related to PANDAS, but any health or mental health concern. This larger scale project can further enhance the need for interdisciplinary collaboration beyond that of the school nurse, school counselor, school principal, and school psychologist.
The referral log demonstrated the need for a continued referral process. Referrals to the school nurse from the counselors, principals, and psychologists was increased. However, there was also the identification of referrals from the “other” source. This can include a multitude of employees from teachers to aides to administrative assistants. Replication of this part of the project, should have a free text option to assist in identifying the other roles. The school nurse decided whether the student needed a referral to the health care provider. There was no rationale as to why some students were referred and others were not. This suggests a need for a formalized referral process or decision tree for school nurses.
As this project has shown, there is value in educating school staff on chronic conditions among students and the importance of interdisciplinary collaboration and the role of school nurses. Once a student is diagnosed with a condition that school members may be unfamiliar with, it is imperative that knowledge is received. This educational intervention and increase in collaboration through referrals to the school nurses, is consistent with the foundation of school nurse practice of Whole School, Whole Community, and Whole Child model (WSCC) (NASN, 2017). School nurses are a vital resource in the care of students and school communities. Collaboration among the school nurse, counselor, psychologists, and principals is integral for both the academic success and health of students (Fleming & Willgerodt, 2017; Stone & Charles, 2018; Tuttle et al., 2018).
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) received no financial support for the research, authorship, and/or publication of this article
Tiffany M. Boyd https://orcid.org/0000-0002-6381-4090
Susan M. Moyer https://orcid.org/0000-0002-2916-5402
Supplemental material for this article is available online.
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Tiffany M. Boyd is a National and State Certified School Nurse at Cumberland Valley School District in Mechanicsburg, PA, USA, and an adjunct professor in the Wehrheim School of Nursing at Millersville University, Millersville, PA, USA.
Susan M. Moyer is an assistant professor in the Wehrheim School of Nursing at Millersville University, Millersville, PA, USA.
Dawn Lambert is an assistant professor in the Wehrheim School of Nursing at Millersville University, Millersville, PA, USA