Pediatrics Commons^™

Increasing The Rate Of Infants Rooming In With Their Mothers With Low-Acuity Congenital Heart Disease, Anna Nelson, Amy Marks, Ekta Patel

Research Days

This quality improvement study aimed to increase the number of infants with low-acuity congenital heart disease that could room-in with their mothers in a high-risk delivery center.

Automate Isolation Infection-Prevention Precautions (Aid-Ip): Improving The Efficiency Of Hospital Isolation With Viral Respiratory Infections, Timothy Burchard, Michael Platt, La'sonya Buford

Research Days

The AID-IP project is a QI study working to improve the process of isolation and de-isolation regarding respiratory viruses at Children's Mercy Hospital. Specifically, we aim to improve adherence to proper isolation precautions, minimize cognitive workload regarding the maintenance of isolation for staff, and improve family satisfaction with isolation practice.

Nrp, Pals, And Their Utilization During Code Events In A Pediatric Quaternary Hospital: A 'Compressed' Analysis, Mitch Kinkor, Deepa Kumar, Allison Taber, Stephen Pfeiffer, Jessica Brunkhorst, Danielle Reed

Research Days

Both the Pediatric Advanced Life Support (PALS) and Neonatal Resuscitation Program (NRP) algorithms are utilized for resuscitation during pediatric codes. The optimal time period to transition from NRP to PALS is not well studied. This study describes the utilization of chest compressions, prescribed medications, and patient outcomes during and after code events organized by the algorithm used to direct resuscitation (PALS or NRP) in a similarly aged patient population.

Identification Of Genetic Disorders Based On Phenotype And Subsequent Medical Management, Sara J. Strandlund, Jotishna Sharma, Bonnie R. Sullivan, Ashley K. Sherman, Laura A. Cross

Research Days

Many genetic disorders in the neonatal period contribute to significant morbidity and mortality. This study evaluates the indications for genetic testing based on phenotype and compares these with the diagnostic yield of symptom driven exome sequencing and chromosome microarray in the NICU. Overall, this study highlights that while there are diagnostic limitations to exome sequencing, genetic testing remains an important adjunct to clinical care.

Health Disparities In Slipped Capital Femoral Epiphysis (Scfe) Presentation, Rithika Ginjupalli, George Thomas, Rohit Siddabattula, Richard M. Schwend, Caleb Grote

Research Days

This study identifies various health disparities in SCFE presentations using neighborhood-level determinants COI and ICE in addition to sociodemographic determinants such as race and gender.

Prognostic Impact Of Cooccurring Mutations In Flt3-Itd Pediatric Acute Myeloid Leukemia., Katherine Tarlock, Robert B. Gerbing, Rhonda E. Ries, Jenny L. Smith, Amanda Leonti, Benjamin J. Huang, Danielle Kirkey, Leila Robinson, Jack H. Peplinksi, Beverly Lange, Todd M. Cooper, Alan S. Gamis, E Anders Kolb, Richard Aplenc, Jessica A. Pollard, Todd A. Alonzo, Soheil Meshinchi

Manuscripts, Articles, Book Chapters and Other Papers

We sought to define the cooccurring mutational profile of FLT3-ITD-positive (ITDpos) acute myeloid leukemia (AML) in pediatric and young adult patients and to define the prognostic impact of cooperating mutations. We identified 464 patients with FLT3-ITD mutations treated on Children's Oncology Group trials with available sequencing and outcome data. Overall survival, event-free survival (EFS), and relapse risk were determined according to the presence of cooccurring risk stratifying mutations. Among the cohort, 79% of patients had cooccurring alterations across 239 different genes that were altered through mutations or fusions. Evaluation of the prognostic impact of the cooccurring mutations demonstrated that patients …

Bridging Services To Evidenced-Based Care: Implementing A Psychology Consult Check-Up Clinic, Jacqueline Pabis Phd, Sabrina Ung Ma, Angela Combs Ma, Mallory Netz Phd, Carisa Parrish Phd, Casey Lawless Phd

Research Days

This quality improvement project examines the feasibility, satisfaction, and preliminary outcomes of a hospital follow-up program for the CMH Inpatient Psychology Consultation & Liaison team.

Improving Awareness And Utilization Of Safety Net Resources After Extremity Firearm Injury, Colleen M. Moreland, Caleb W. Grote, Richard M. Schwend, Julia G. Harris

Research Days

The orthopaedic surgery department can improve follow-on care for pediatric survivors of extremity firearm injuries by creating and implementing a checklist of defined safety net resources.

A Quality Improvement Project To Improve Antibiotic Choice For Children Admitted With Urinary Tract Infections (Utis), Philip Jurasinski Do, Pgy-3, Adrienne Deporre Md, Kathleen Berg Md, Allison Hadley Md, Viktoriya Stoycheva Mha, Rn, Cpn, Rana El Feghaly Md

Research Days

This is an antibiotic stewardship quality improvement project focused on improving antibiotic choices for children with urinary tract infections who are in the Children's Mercy Kansas City system. This project aims to improve the rates of cefazolin or cephalexin for treatment from 27% to 60%. 96% of urinary tract infections in our system are caused by E. Coli that are susceptible to these first generation cephalosporins.

More Of Less: Optimizing Opioid Prescriptions For Acute Fractures In The Emergency Department At A Children’S Hospital, Colton Schwarz, Spencer Wittmeyer, Mitch Kinkor, Michelle Dephillips, Elizabeth Edmundson, Ryan Mcdonough, Warren Teachout, Nicholas Clark

Research Days

Quality improvement project that aims to improve opioid stewardship in acute fracture management.

Characterization Of Nationally Reported Pediatric Deaths Involving Fentanyl Ingestions In Missouri, Margaret Campbell, Mary Moffatt, Emily Killough, Terra Frazier

Research Days

There has been a dramatic rise in pediatric deaths associated with synthetic opioid use, with the most prominent being Fentanyl. This is a retrospective cohort study using data from the National Center for Fatality Review and Prevention with the goal of identifying risk factors that increase the vulnerability of children to Fentanyl ingestion. Ultimately this research may help lead to improved identification of at risk children with the goal of implementation of targeted prevention programming.

How Neonates Die: Mortality Trends And Associations In A Level Iv Neonatal Intensive Care Unit, Erin Bolen, Ashley K. Sherman, Julie Weiner, Jotishna Sharma

Research Days

Background

Modes of neonatal mortality include withdrawal of life-sustaining interventions, non-escalation of interventions, and secondary to a code event. Mortality trends have been examined broadly, but the impact of clinical and demographic factors on the mode of neonatal mortality has yet to be evaluated. A greater understanding of this information would help guide medical decision-making and identify potential inequities. The aim is to evaluate the impact of clinical and demographic factors on the mode of neonatal death in a level IV neonatal intensive care unit (NICU).

Study Design/Methods

Data were collected via retrospective chart review of patients who died at …

Socioeconomic Differences In Penicillin Allergy Label Rates Of Children Evaluated In Pediatric Emergency Departments And Urgent Cares, Zoya Siddiqui, Brian R. Lee, Amanda Nedved, Jennifer Mckinsey, Frances Turcotte Benedict, Brandi Missel, Aarti Pandya, Rana El Feghaly

Research Days

In this retrospective study of 183,692 patients ≤19 years evaluated in urgent cares and emergency departments of a large pediatric academic center July 2022- June 2023, we found that in addition to race, socioeconomic status reflected by insurance and area deprivation index had a large association with penicillin allergy labels.

Improving Nutritional Delivery To Pediatric Patients While Using Continuous Renal Replacement Therapy, Jennifer Ruiz-Boada, Sarah Brunner, Tara Benton, Vimal Chadha

Research Days

This quality improvement guide aims to enhance early nutritional delivery to pediatric patients with renal failure who require renal replacement therapy.ng renal replacement therapy.

Understanding Inpatient Diagnostic Imaging Use In Children’S Hospitals To Prioritize Stewardship Efforts, Megan E. Collins, Matt Hall, John Stephens, Jessica L. Markham

Research Days

We utilized the Pediatric Health Information System to perform a retrospective cohort study of hospitalized children across 45 hospitals to describe diagnostic imaging studies among hospitalized children with the highest prevalence, cost, rates of repetition, and hospital variation to help inform de-implementation efforts.

Electrical Stimulation Of The Medial Pin After Insertion Is Safe And Effective In Preventing Iatrogenic Ulnar Nerve Neuropraxias In Type Iii Supracondylar Fractures. A Case Series Of 128 Consecutive Patients., Lucas Georger B.A., Mckenna Noe B.S., Richard M. Schwend M.D.

Research Days

This case series explores the safety and efficacy of using a disposable nerve stimulator for intraoperative stimulation of both medial and lateral pins in Gartland type III supracondylar humerus fractures, revealing no instances of ulnar nerve stimulation response or postoperative iatrogenic ulnar nerve injury, thereby highlighting the potential for this cost-effective approach to ensure stable medial column pin fixation without ulnar nerve complications.

Safety And Efficacy Of Intraoperative Vectored Traction With Gardner-Wells (Gw) Tongs For Pediatric Spine Deformity Surgery - A Series Of 1000 Cases, Lucas Georger B.A., Krish Sardesai B.A., Andrew Dumas B.S., Mckenna Noe B.S., Richard M. Schwend M.D.

Research Days

Conducting an ongoing exploration, this study delves into the safety and efficacy of Gardner-Wells Tongs in pediatric spinal deformity surgery, involving a series of 418 cases, revealing a 5.5% complication rate primarily associated with facial swelling and abrasions, emphasizing the need for further investigation to validate the safety and effectiveness of this intervention.

Parallel Use Of Low-Complexity Automated Nucleic Acid Amplification Tests On Respiratory Samples And Stool With Or Without Lateral Flow Lipoarabinomannan Assays To Detect Pulmonary Tuberculosis Disease In Children, Laura Olbrich, Alexander W Kay, Stephanie Bjerrum, Bada Yang, Johanna Åhsberg, Ruvandhi R Nathavitharana, Andreas Lundh, Maunank Shah, Devan Jaganath

Faculty, Staff and Students Publications

This is a protocol for a Cochrane Review (diagnostic). The objectives are as follows: To compare the diagnostic accuracy of the parallel use of low-complexity automated nucleic acid amplification tests on respiratory and stool specimens in children and lateral flow urine lipoarabinomannan amongst children with HIV versus each assay alone for detecting pulmonary tuberculosis. Secondary objectives To compare the diagnostic accuracy of low-complexity automated nucleic acid amplification tests on respiratory and stool specimens in combination versus each sample type alone. To investigate the following sources of heterogeneity: clinical setting, signs and symptoms of pulmonary tuberculosis disease, screening positivity by chest …

Parallel Use Of Low-Complexity Automated Nucleic Acid Amplification Tests And Lateral Flow Urine Lipoarabinomannan Assays To Detect Tuberculosis Disease In Adults And Adolescents Living With Hiv, Stephanie Bjerrum, Bada Yang, Johanna Åhsberg, Ruvandhi R Nathavitharana, Laura Olbrich, Devan Jaganath, Alexander W Kay, Andreas Lundh, Maunank Shah

Faculty, Staff and Students Publications

This is a protocol for a Cochrane Review (diagnostic). The objectives are as follows: To compare the diagnostic accuracy of parallel use of lateral flow urine lipoarabinomannan on urine and low-complexity automated nucleic acid amplification tests on respiratory samples versus each test alone for detection of tuberculosis disease in adults and adolescents living with HIV who present with presumptive tuberculosis. Secondary objectives To investigate the following sources of heterogeneity: clinical setting; signs and symptoms of tuberculosis; screening positivity for tuberculosis disease by chest x-ray, C-reactive protein elevation, and molecular World Health Organization-recommended rapid diagnostics; seriously ill; advanced HIV; and CD4 …

Vitamin C: Is It Relevant Or Obsolete In The Modern Era?, Suruchi Ramanujan, Kadakkal Radhakrishnan

Student Scholarship

Purpose: In this review, we discuss the historic background of vitamin C, vitamin C’s physiology, its dietary sources, and how deficiency can manifest. We also discuss modern studies investigating the role of Vitamin C in immunity, in cardiovascular disease, and in chronic conditions. Summary: In the body, vitamin C acts as an essential cofactor in several enzymatic reactions including, but not limited to, neurotransmitter synthesis, hormone amidation, collagen synthesis, hypoxic transcription factor modification, and epigenetic modifications. Scurvy, caused by severe vitamin C deficiency, is an infamous disease recorded in historical documents, with patients presenting with joint ache, bleeding gums, depression, …

Disparities In Accessing Specialty Behavioral Health Services During The Covid-19 Pandemic And Why We Need Pediatric Integrated Primary Care., Ayanda Chakawa, Trista Perez Crawford, Leslee Belzer, Hung-Wen Yeh

Manuscripts, Articles, Book Chapters and Other Papers

OBJECTIVE: Youth unmet behavioral health needs are at public health crisis status and have worsened since the onset of the coronavirus disease 2019 pandemic (Covid-19). Integrating behavioral health services into pediatric primary care has shown efficacy in addressing youth behavioral health needs. However, there is limited guidance on facilitating equitable access to care in this setting, including in triaging access to co-located services (i.e., onsite outpatient behavioral health services with only the behavioral health provider) or to specialty behavioral health services in other clinics within larger health systems.

METHODS: A retrospective, comparative study was conducted to examine variability in access …

Pediatric Dermatologists Versus Ai Bots: Evaluating The Medical Knowledge And Diagnostic Capabilities Of Chatgpt, Charles Y. Huang, Esther Zhang, Marie-Chantal Caussade, Trinity Brown, Griffin Stockton Hogrogian, Albert C. Yan

Student Papers, Posters & Projects

This study evaluates the clinical accuracy of OpenAI's ChatGPT in pediatric dermatology by comparing its responses on multiple-choice and case-based questions to those of pediatric dermatologists. ChatGPT's versions 3.5 and 4.0 were tested against questions from the American Board of Dermatology and the "Photoquiz" section of Pediatric Dermatology. Results show that human pediatric dermatology clinicians generally outperformed both ChatGPT iterations, though ChatGPT-4.0 demonstrated comparable performance in some areas. The study highlights the potential of AI tools in aiding clinicians with medical knowledge and decision-making, while also emphasizing the need for continual advancements and clinician oversight in using such technologies.

Improving Pneumococcal Vaccination Rates In Immunosuppressed Pediatric Patients With Rheumatic Disease., Julia G. Harris, Jordan T. Jones, Leslie Favier, Emily Fox, Michael J. Holland, Amy Ivy, Cara M. Hoffart, Maria Ibarra, Ashley M. Cooper

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Patients with rheumatic diseases are at a high risk of invasive pneumococcal disease due to immunosuppression. We conducted a quality improvement project, and the first aim was to increase the percentage of patients with systemic lupus erythematosus and mixed connective tissue disease that is up to date on pneumococcal vaccinations from 9.6% to 80% within one year. Subsequently, the second aim was to increase the percentage of patients on immunosuppression with systemic lupus erythematosus, mixed connective tissue disease, juvenile dermatomyositis and systemic vasculitis that is up to date on pneumococcal vaccinations from 62.6% to 80% within one year.

METHODS: …

Exome Sequencing Implicates Ancestry-Related Mendelian Variation At Syne1 In Childhood-Onset Essential Hypertension, Ian Copeland, Edmond Wonkam-Tingang, Monesha Gupta-Malhotra, S Shahrukh Hashmi, Yixing Han, Aarti Jajoo, Nancy J Hall, Paula P Hernandez, Natasha Lie, Dan Liu, Jun Xu, Jill Rosenfeld, Aparna Haldipur, Zelene Desire, Zeynep H Coban-Akdemir, Daryl A Scott, Qing Li, Hsiao-Tuan Chao, Ana M Zaske, James R Lupski, Dianna M Milewicz, Sanjay Shete, Jennifer E Posey, Neil A Hanchard

Faculty, Staff and Student Publications

Childhood-onset essential hypertension (COEH) is an uncommon form of hypertension that manifests in childhood or adolescence and, in the United States, disproportionately affects children of African ancestry. The etiology of COEH is unknown, but its childhood onset, low prevalence, high heritability, and skewed ancestral demography suggest the potential to identify rare genetic variation segregating in a Mendelian manner among affected individuals and thereby implicate genes important to disease pathogenesis. However, no COEH genes have been reported to date. Here, we identify recessive segregation of rare and putatively damaging missense variation in the spectrin domain of spectrin repeat containing nuclear envelope …

Anxiety Overview And How To Help Your Child, Maggie Mckay, Meghan Kanya

Parent-ish Podcast

Meghan Kanya, PhD, discusses an overview of anxiety, including causes, signs your child may be struggling, and how you as a parent can help.

Click here to stream the podcast episode.

Researching Covid To Enhance Recovery (Recover) Pediatric Study Protocol: Rationale, Objectives And Design, Rachel S. Gross, Tanayott Thaweethai, Erika B. Rosenzweig, James Chan, Lori B. Chibnik, Mine S. Cicek, Amy J. Elliott, Valerie J. Flaherman, Andrea S. Foulkes, Margot Gage Witvliet, Richard Gallagher, Maria Laura Gennaro, Terry L. Jernigan, Elizabeth W. Karlson, Stuart D. Katz, Patricia A. Kinser, Lawrence C. Kleinman, Michelle F. Lamendola-Essel, Joshua D. Milner, Sindhu Mohandas, Praveen C. Mudumbi, Jane W. Newburger, Kyung E. Rhee, Amy L. Salisbury, Jessica N. Snowden, Cheryl R. Stein, Melissa S. Stockwell, Kelan G. Tantisira, Tamara Bradford, Et Al

School of Medicine Faculty Publications

Importance The prevalence, pathophysiology, and long-term outcomes of COVID-19 (post-acute sequelae of SARS-CoV-2 [PASC] or “Long COVID”) in children and young adults remain unknown. Studies must address the urgent need to define PASC, its mechanisms, and potential treatment targets in children and young adults. Observations We describe the protocol for the Pediatric Observational Cohort Study of the NIH’s REsearching COVID to Enhance Recovery (RECOVER) Initiative. RECOVER-Pediatrics is an observational meta-cohort study of caregiver-child pairs (birth through 17 years) and young adults (18 through 25 years), recruited from more than 100 sites across the US. This report focuses on two of …

Developing And Validating A Nomogram For Early Predicting The Need For Intestinal Resection In Pediatric Intussusception, Yuan-Yang Yu, Jia-Jie Zhang, Ya-Ting Xu, Zheng-Xiu Lin, Shi-Kun Guo, Zhong-Rong Li, Hui-Ya Huang, Xiao-Zhong Huang

Faculty, Staff and Student Publications

PURPOSE: Develop and validate a nomogram for predicting intestinal resection in pediatric intussusception suspecting intestinal necrosis.

PATIENTS & METHODS: Children with intussusception were retrospectively enrolled after a failed air-enema reduction in the outpatient setting and divided into two groups: the intestinal resection group and the non-intestinal resection group. The enrolled cases were randomly selected for training and validation sets with a split ratio of 3:1. A nomogram for predicting the risk of intestinal resection was visualized using logistic regression analysis with calibration curve, C-index, and decision curve analysis to evaluate the model.

RESULTS: A total of 547 cases were included …

Researching Covid To Enhance Recovery (Recover) Pediatric Study Protocol: Rationale, Objectives And Design., Rachel S. Gross, Tanayott Thaweethai, Erika B. Rosenzweig, James Chan, Lori B. Chibnik, Mine S. Cicek, Amy J. Elliott, Valerie J. Flaherman, Andrea S. Foulkes, Margot Gage Witvliet, Richard Gallagher, Maria Laura Gennaro, Terry L. Jernigan, Elizabeth W. Karlson, Stuart D. Katz, Patricia A. Kinser, Lawrence C. Kleinman, Michelle F. Lamendola-Essel, Joshua D. Milner, Sindhu Mohandas, Praveen C. Mudumbi, Jane W. Newburger, Kyung E. Rhee, Amy L. Salisbury, Jessica N. Snowden, Cheryl R. Stein, Melissa S. Stockwell, Kelan G. Tantisira, Moriah E. Thomason, Dongngan T. Truong, David Warburton, John C. Wood, Shifa Ahmed, Almary Akerlundh, Akram N. Alshawabkeh, Brett R. Anderson, Judy L. Aschner, Andrew M. Atz, Robin L. Aupperle, Fiona C. Baker, Venkataraman Balaraman, Dithi Banerjee, Deanna M. Barch, Arielle Baskin-Sommers, Sultana Bhuiyan, Marie-Abele C. Bind, Amanda L. Bogie, Tamara Bradford, Natalie C. Buchbinder, Elliott Bueler, Hülya Bükülmez, B J Casey, Linda Chang, Maryanne Chrisant, Duncan B. Clark, Rebecca G. Clifton, Katharine N. Clouser, Lesley Cottrell, Kelly Cowan, Viren D'Sa, Mirella Dapretto, Soham Dasgupta, Walter Dehority, Audrey Dionne, Kirsten B. Dummer, Matthew D. Elias, Shari Esquenazi-Karonika, Danielle N. Evans, E Vincent S. Faustino, Alexander G. Fiks, Daniel Forsha, John J. Foxe, Naomi P. Friedman, Greta Fry, Sunanda Gaur, Dylan G. Gee, Kevin M. Gray, Stephanie Handler, Ashraf S. Harahsheh, Keren Hasbani, Andrew C. Heath, Camden Hebson, Mary M. Heitzeg, Christina M. Hester, Sophia Hill, Laura Hobart-Porter, Travis K F Hong, Carol R. Horowitz, Daniel S. Hsia, Matthew Huentelman, Kathy D. Hummel, Katherine Irby, Joanna Jacobus, Vanessa L. Jacoby, Pei-Ni Jone, David C. Kaelber, Tyler J. Kasmarcak, Matthew J. Kluko, Jessica S. Kosut, Angela R. Laird, Jeremy Landeo-Gutierrez, Sean M. Lang, Christine L. Larson, Peter Paul C. Lim, Krista M. Lisdahl, Brian W. Mccrindle, Russell J. Mcculloh, Kimberly Mchugh, Alan L. Mendelsohn, Torri D. Metz, Julie Miller, Elizabeth C. Mitchell, Lerraughn M. Morgan, Eva M. Müller-Oehring, Erica R. Nahin, Michael C. Neale, Manette Ness-Cochinwala, Sheila M. Nolan, Carlos R. Oliveira, Onyekachukwu Osakwe, Matthew E. Oster, R Mark Payne, Michael A. Portman, Hengameh Raissy, Isabelle G. Randall, Suchitra Rao, Harrison T. Reeder, Johana M. Rosas, Mark W. Russell, Arash A. Sabati, Yamuna Sanil, Alice I. Sato, Michael S. Schechter, Rangaraj Selvarangan, S Kristen Sexson Tejtel, Divya Shakti, Kavita Sharma, Lindsay M. Squeglia, Shubika Srivastava, Michelle D. Stevenson, Jacqueline Szmuszkovicz, Maria M. Talavera-Barber, Ronald J. Teufel, Deepika Thacker, Felicia Trachtenberg, Mmekom M. Udosen, Megan R. Warner, Sara E. Watson, Alan Werzberger, Jordan C. Weyer, Marion J. Wood, H Shonna Yin, William T. Zempsky, Emily Zimmerman, Benard P. Dreyer, Recover-Pediatric Consortium

Manuscripts, Articles, Book Chapters and Other Papers

IMPORTANCE: The prevalence, pathophysiology, and long-term outcomes of COVID-19 (post-acute sequelae of SARS-CoV-2 [PASC] or "Long COVID") in children and young adults remain unknown. Studies must address the urgent need to define PASC, its mechanisms, and potential treatment targets in children and young adults.

OBSERVATIONS: We describe the protocol for the Pediatric Observational Cohort Study of the NIH's REsearching COVID to Enhance Recovery (RECOVER) Initiative. RECOVER-Pediatrics is an observational meta-cohort study of caregiver-child pairs (birth through 17 years) and young adults (18 through 25 years), recruited from more than 100 sites across the US. This report focuses on two of …

What Every New Parents Should Know About Newborns, Maggie Mckay, Katie Mcanany

Parent-ish Podcast

Katie McAnany, MD covers all your frequently asked questions about newborns - from feeding to sleep, soothing to play, so you can feel confident bringing home your new bundle of joy.

Click here to stream the podcast episode.

Provider Perceptions Of Pediatric Obesity Management In The Primary Care Setting, Rina Edelson

Conference Presentation Abstracts

Background: Childhood obesity is a critical public health issue. The primary care setting provides an accessible avenue for management. However, primary care physicians report significant barriers to success in treating this condition.

Objective: The purpose of this study was to compare clinician perception of pediatric overweight and obesity management before and after implementation of a standardized treatment protocol based on the clinical practice guidelines released by the American Academy of Pediatrics in January 2023.

Design/Methods: This study was deemed exempt by the Institutional Review Board. A survey was created by the study team to assess 5 domains: disease knowledge, current …