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Diagnostic Criteria Associated with a Cohort of Children Identified with Symptoms of Postinfectious Autoimmune Encephalopathy A

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Diagnostic Criteria Associated with a Cohort of Children Identified with Symptoms of Postinfectious Autoimmune Encephalopathy A DIAGNOSTIC CRITERIA ASSOCIATED WITH A COHORT OF CHILDREN IDENTIFIED WITH SYMPTOMS OF POSTINFECTIOUS AUTOIMMUNE ENCEPHALOPATHY A Scholarly Project submitted to the faculty of the Graduate School of Arts and Sciences of Georgetown University in partial fulfillment of the requirements for the degree of Doctor of Nursing Practice By Tara Fox, M.S.N. Washington, DC March 31, 2020 Copyright by 2020 by Tara R. Fox All Rights Reserved ii DIAGNOSTIC CRITERIA ASSOCIATED WITH A COHORT OF CHILDREN IDENTIFIED WITH SYMPTOMS OF POSTINFECTIOUS AUTOIMMUNE ENCEPHALOPATHY (PAE) Tara R. Fox, M.S.N Thesis Advisor: Jean Farley, D.N.P. and Margaret Slota, D.N.P. ABSTRACT Postinfectious Autoimmune Encephalopathy (PAE) is well defined in the literature; however, a provider may be unaware of its existence or have a difficult time distinguishing the disorder from other neuropsychiatric conditions, such as OCD and anxiety (Leon, et. al, 2018). Availability of a valid and reliable screening tool would contribute to improved accuracy in the secondary prevention of PAE. (Helm & Blackwood, 2015). The primary purpose of this project is to determine the frequency that patients clinically identified as having PAE present with diagnostic criteria described in the literature to begin the first step developing such a tool. PAE is a condition in which an infection triggers an autoimmune reaction that targets the nervous system, leading to changes in neurologic function, mood and behavior. PAE includes disorders such as PANDAS, PANS, CANS, PiTANDS, and Sydenham Chorea (Pruss, 2017), and has been recognized as a diagnostic entity since 1995 (Swedo et al., 1998). A strategic search was done at a university library utilizing web-based search engines. Articles retained suggest that the criteria for diagnosis of PAE are well defined and utilized as a standard for research regarding this disorder. However, patient referral from primary care sources can be unpredictable (Helm & Blackwood, 2015). A non-experimental chart review was done applying investigator-designed extraction questions to a data base consisting of patient information specifically seen for evaluation of PAE. iii The list of extraction questions is computer-based and consist of “yes” or “no” questions targeting primary, secondary and tertiary symptoms identified through a literature review. Descriptive statistics, a Pearson’s chi square testing, and a cluster analysis were performed to determine symptoms association with PAE. One hundred and three patient records entered into a REDCap CPAE Registry were reviewed using the extraction questions. Compulsive behavior was most frequent present. Urinary symptoms, dysgraphia, and emotional lability displayed differences based on PAE Diagnosis (CPAE 1= meets diagnosed, CPAE 2= meets diagnosis by major or minor criteria, and CPAE 3= does not meet diagnosis). The project concluded that further investigation is necessary to determine the symptoms associated with PAE. iv ACKNOWLEDGEMENTS I liked to express my deepest gratitude to all of those who made this project possible. To my mentor, Dr. Jean Farley, who offered critical guidance and continual positive feedback throughout the process. To my co-mentor, Dr. Margaret Slota, who has always offered encouraging words and been persistent in reassuring the importance of this project to the field. To all the faculty at Georgetown University who have given me the opportunity to improve my craft as a clinician, leader, and researcher. I would also like to extend my gratitude to my classmates who have been my cheerleaders and partners, without whom I may have lost my sanity. The completion of this project would not be possible without the hard work of my content expert, Dr. Sydney Rice, and all those involved at the PAE Clinic at the University of Arizona. As with many projects, this one was not without its hurdles. Thank you, Dr. Rice, as you were truly instrumental in the development of the extraction questions. Your care for patients, families, and the research surrounding PAE is truly palpable. A special thanks to Ms. Linnette Ortiz who was the true innovator in ensuring this project came to fruition, and Dr. Jennifer Andrews who continually kept the project on schedule and within its scope. I would also like to thank my undergraduate researcher, Mr. Steven Mathew, who masterfully learned the extraction questions and methods to collect data. I am truly indebted to this great team who I hope to continue to work with to improve the quality of lives of those suffering from this life- altering disorder. Finally, I liked to thank my caring, loving, and supportive family. To my significant other and better half, Aaron, thank you for tolerating me while juggling all that comes along with v being a professional in school. You have not only been comic relief but provided prospective at times of where work, school and life seem daunting. Words cannot express my gratitude to you. To my mother, father, and grandfathers, who continually offer unconditional love and support which has given me the confidence to succeed in any endeavor. Your listening ear and interest in my project (even with its complicated medical concepts) is not unnoticed. Last but not least, to my siblings who are always first to my side, figuratively and literally. My heartfelt thanks. vi TABLE OF CONTENTS Chapter I: Introduction .................................................................................................................... 1 Significance of the Problem ........................................................................................................ 1 Research Questions and Aims ..................................................................................................... 4 Theoretical Framework ............................................................................................................... 5 Definition of Terms ..................................................................................................................... 6 Chapter II: Review of Literature ..................................................................................................... 9 Introduction to Search Criteria .................................................................................................... 9 Body of Evidence ...................................................................................................................... 11 Critique and Synthesis of Previous Evidence ........................................................................... 12 Rationale for Project.................................................................................................................. 15 Chapter III: Methods ..................................................................................................................... 17 Design........................................................................................................................................ 17 Procedures ................................................................................................................................. 18 Human Subject Review ............................................................................................................. 19 Population.................................................................................................................................. 21 Instrument Tools ....................................................................................................................... 21 Data Analysis Plan .................................................................................................................... 22 Chapter IV: Results ....................................................................................................................... 23 Analysis of Data ........................................................................................................................ 23 Summary of Findings ................................................................................................................ 27 Chapter V: Discussions and Conclusions ..................................................................................... 29 Discussion of Findings .............................................................................................................. 29 Limitations ................................................................................................................................ 30 Implications ............................................................................................................................... 32 Recommendations ..................................................................................................................... 33 Appendix A: Extraction Data and Questions ............................................................................ 34 Appendix B: Numeric Coding for PAE .................................................................................... 35 References ..................................................................................................................................... 36 vii Chapter I Introduction Pediatric patients are inherently a vulnerable population due to their lack of autonomy and reliance on caregivers. Thus, there are often ethical and legal challenges in collecting data, conducting research, and identifying evidence-based practices when caring for pediatric patients. Children with neuropsychiatric symptoms are particularly at risk for
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