May 10, 2019
In This Issue

Research Spotlight: CHOP Announces Latest Round of Chair's Initiatives

CPCE In the News:
Several news outlets cover CHOP and CPCE participation at PAS

CPCE In the News:
These pediatricians 'prescribe' kids books, to boost your baby's brain 

Open positions in cancer survivorship research

Upcoming Events

Recent Publications
CHOP Announces Latest Round of Chair's Initiatives

This week the CHOP Department of Pediatrics announced the seventh round of “Chair’s Initiatives,” and CPCE is well represented among the seven projects awarded.

The Chair’s Initiatives began more than a decade ago to establish new models of care in pediatrics and tackle some of the most daunting challenges in healthcare. The program provides internal grants to support innovation, improvement and collaboration throughout and beyond Children’s Hospital. The new projects will begin on July 1, 2019 and are listed below. Learn more about the program here.

Adolescent Mobile Health Unit
Marne Castillo, PhD and Team

Leveraging the Baldrige Performance Excellence Framework to Embed Evidenced Based Management Practices in Ambulatory Operations and Improve Patient Access to Care
April M. Taylor, MS, MHA, Melissa Muego, MD, Ashwini Reddy, MD Flaura Winston, MD PhD, Larry Barnes, Maryann Chilkatowsky, Lynsey Cecere, Lena Leff, Tiruayer Battle, Zakiya Devine, James Won, PhD, Miriam Stewart, MD, Amy Kratchman, Gina Zappacosta, Lisa Biggs, Eli Lourie, Kate Fuller

Communicating and Connecting Mental Health Needs of Patients
Jeremy Esposito MD MSEd, Joel Fein MD MPH, Stephanie Doupnik MD MSHP, Wendy Wallace DO, Erin Perry LCSW, Jami Young PhD, Stephen Soffer PhD, Jason Lewis PhD

Debriefing: Broken Down and Rebuilt
Eron Friedlaender MD, MPH, Pamela Fazzio MD, Trish Janoff RN Dawn DeBrocco PsyD, Heather Wolfe MD, Summer Elshenawy MD, Mary Haggerty DO, Theresa O’Connor RN, Shobha Natarajan MD, Maryam Naim MD, Meghan Galligan MD, Christina McClam MD

Endocrine Late Effects after Cancer Therapy (ELECT) Program
Sogol Mostoufi-Moab, MD, MSCE & Colin P Hawkes, MD, PhD

Pulmonary and Allergy Problematic Asthma (PAPA) Clinic
Sigrid DaVeiga, MD, Jeffrey M. Ewig, MD

Doctor-to-Doctor Teledermatology: Leading the Way in High-Quality Pediatric Telemedicine
Aditi Murthy, MD Patrick McMahon, MD, Kristen Danley, MD
Several news outlets cover CHOP and CPCE participation at PAS

The Pediatric Academic Societies Meeting took place April 24 - May 1, 2019 in Baltimore, MD. Many CPCE faculty and research staff presented results of their work. We provided regular updates on Twitter. We're already looking forward to the PAS 2020 meeting, which will take place here in Philadelphia!

These pediatricians 'prescribe' kids books, to boost your baby's brain

WHYY highlighted the Reach Out and Read program, which was founded by two Boston pediatricians in 1989 and is now at 6,2000 clinics nationwide, including several at CHOP. CPCE and PolicyLab Core Faculty member James Guevara, MD, MPH and other CHOP care providers contributed to the story. Research by Dr. Guevara and his team has looked at the way children interact with stories on mobile devices vs. traditional books. "We didn't see it as a benefit," he said, referring to the electronic version.

Open positions in cancer survivorship research

CPCE Core Faculty member Lisa Schwartz, PhD is seeking lab staff at various levels (PhD, MS/MA, BS/BA, student, postdoctoral research fellow). Her lab focuses on self-management of adolescents and young adults (AYA) impacted by cancer (those with cancer predisposition, on active treatment, or survivors). Areas of study include: 1) a multi-site study tracking self-management of AYA survivors, 2) mobile health (text, app, biosensor) interventions and assessment, 3) implementation of survivorship care plans, 4) pain and acupuncture, and 5) longitudinal tracking and outcomes of families with youth tested for cancer predisposition. Many studies include digital/mHealth components, mixed methods, validation of measures, and interventions. For more details, click here or contact Dr. Schwartz
Upcoming Events

Supporting Educator Identity in Clinical and Academic Workplaces: What Does the Literature Tell Us?
Date: Tuesday, May 14, 2019           
Time: 5:00-6:00pm
Location: Colket Building, room 11040
Physicians who identify themselves as career 'educators' can feel less valued than those who identify as 'clinicians' and/or 'researchers'. While this perception can lead to demotivation and burnout, there are proven strategies that medical educators can use to minimize the personal impact of these feelings. Dr. Peter Cantillon will share his research on physician-educator identity and will provide insights into how we build and strengthen educator identity, and how we mitigate factors that may serve to erode it.
 
Health and Behavior RAG Hosting: “What is ARCUS?”
Date: Thursday, May 16, 2019
Time: 12:30-1:30pm
Location: Roberts Center Room 2160.
The Health and Behavior Research Affinity Group will host an event on May 16, 2019. Jeff Pennington, Associate Vice President and Chief Research Informatics Officer, will give a talk entitled, “What is ARCUS?” The talk will focus on ARCUS, its future, and the comparisons to and contrasts with other CHOP platforms in use for patient data.

CHOP Research Institute Poster Day and Scientific Symposium
Dates: May 21-22, 2019
In 2019, the CHOP Research Institute will bring together its largest community-building events, CHOP Research Poster Day and the Scientific Symposium, to create a two-day celebration of all-things-research. More details available online, or questions questions may be directed to the Office of Academic Training and Outreach Programs.

Developing Personalized, Adaptive Interventions using the Sequential Multiple Assignment Randomized Trial (SMART) Design - Clinical Trials RAG Seminar
Date: June 5, 2019
Time: 12:00 PM - 1:00 PM
Location: Roberts Center, Room 2-160
Presented by Kristin A. Linn, PhD, Assistant Professor, Biostatistics, Perelman School of Medicine. For more information or to RSVP, email clinicaltrialsRAG@email.chop.edu .

The 7th annual Symposium on Advances in Genomics, Epidemiology and Statistics 
Date: Friday, June 7, 2019
Location: Arthur H. Rubenstein Auditorium. Smilow Center for Translational Research 
All participants of SAGES 2019 are invited to submit an abstract for poster presentation at the time of registration. Poster awards will be available for trainees in pre-doc as well as post-doc categories. A limited number of submissions will be selected for oral presentation at the Symposium. All trainees who submit an abstract for poster presentations are also eligible to receive travel support including transportation and lodging. For further information, please visit: https://www.med.upenn.edu/sages/. 

Global Health in Our Own Backyard: Controversies, Initiatives, and Innovations for Our Local Underserved Populations
Abstract submission deadline: June 14, 2019
Date: October 4-5, 2019.
Location: Colket Building
Abstract submission is open for the 11th Annual CHOP Global Health Conference "Global Health in Our Own Backyard," This Philadelphia-based Conference will explore the intersections between domestic, local and international global pediatric health to better reach the underserved here in the United States. We will take inspiration from innovative programs in the U.S. and from around the world, and think critically about how to apply both South-North and national lessons to provide better, more equitable care in the United States. Registration will open shortly, so please save the date. For more information, click here.
Recent Publications

There are relatively low rates of adolescent and young adult enrollment in cancer clinical trials in the USA. This was studied further by CPCE faculty member Lisa A. Schwartz , which evaluated and sought to validate the Pediatric Research Participation Questionnaire (PRPQ). The PRPQ is a measure of attitudes to clinical trials adapted for AYA with cancer and their caregivers. Barriers to enrollment are both structural and related to attitudes toward clinical trials. The study found that PRPQ-AYA factor structure for AYA and caregivers varied and should be interpreted cautiously due to limited power. Simple solutions of perceived benefits, perceived barriers, and decision balance were reliable and valid and provide important information to address and engage AYA through the clinical trial informed consent process.

Parents of seriously ill children hold strong personal beliefs about how they should be good parents, and these beliefs inform how parents view and evaluate hope for their child. Good-Parent Beliefs can also be a set of duties which a parent believes a “good” parent must fulfill. Some of the major Good-Parent Beliefs include making sure their child feels loved and making informed medical care decisions. These beliefs may change over time as a child’s condition evolves, potentially redefining which duties a parent sees as necessary to be a “good” parent. This study looked at how parents’ beliefs changed over time by initially characterizing the type of Good-Parent Beliefs they held at the beginning of the study, and observing whether (and potentially why) some parents may shift into a different categories. Many parents shifted from considering making informed medical care decisions to making sure their child felt loved as their central Good-Parent Belief.

Youth with onset of systemic lupus erythematosus (SLE) in childhood have more severe disease and are exposed to greater cumulative disease duration and medication use. Children with SLE may be at a higher life-time risk for cardiac dysfunction or face the complications of heart failure at an earlier age. A retrospective study was carried out, seeking to compare measures of left ventricular diastolic function among children with SLE with children without SLE, as well as to identify patient and disease characteristics associated with diastolic indices and other echocardiographic abnormalities.

Andrew Steenhoff , along with co-author Stephen Ludwig, made a case for building a pediatric Global Health workforce in North America, summarizing current effort and highlighting shortfalls. Steenhoff and Ludwig suggested training a workforce of medical providers for global child health, both for domestic “local global” and for “international global child health” settings. Domestic “local global” health involves health of marginalized and underserved populations in a high income country (i.e. USA). Both categories of health share many characteristics that make GH training important for pediatricians in North America, regardless of whether their work is domestic or international. There’s a shortfall of qualified pediatricians who are able to meet the challenges of global and local healthcare. Steenhoff and Ludwig call for defining the important competencies for this type of work, and finding ways to teach them.

Current diagnostic criteria for bronchopulmonary dysplasia rely heavily on the level and duration of oxygen therapy, do not reflect contemporary neonatal care, nor adequately predict childhood mortality. In order to determine which of 18 pre-specified, revised definitions of bronchopulmonary dysplasia, that variably define disease severity according to the level of respiratory support and supplemental oxygen administered at 36 weeks postmenstrual age, best predicts death or serious respiratory morbidity through 18-26 months corrected age, over 2500 infants were studied. The definition of bronchopulmonary dysplasia that categorized disease severity according to the mode of respiratory administered at 36 weeks postmenstrual age was found to be the best predictor of early childhood morbidity.

CPCE faculty members Sagori Mukhopadhyay and Karen Puopolo recently published a piece demonstrating the importance of understanding antibiotic pharmacology, as it can allow neonatal providers to optimize antibiotic choice and minimize resistance-promoting selection pressures. Optimal drug choices for neonatal sepsis prevention and treatment are informed by microbiologic data, use the narrowest-spectrum effective antibiotic, and account for gestational age, postnatal age, and organ function to optimize antibiotic effectiveness, minimize drug toxicities, and avoid resistance-promoting selection pressures.

Congenital heart disease is the most common congenital anatomical defect, and the care of children with congenital heart disease incurs a disproportionally large proportion of pediatric healthcare spending relative to its prevalence. Cardiac catheterization is an important but costly component of health care for young patients with cardiac disease. Measurement of variation in their cost between hospitals and identification of the reasons for this variation may help reduce cost without compromising quality. This study, authored by Michael O’Byrne , Andrew Glatz , Marisa E. Millenson and colleagues, found that there is significant between-hospital variation in the cost of transcatheter procedure that is not explained by case mix. No evidence shows that the higher cost resulted in better quality of care or outcomes.

About CPCE

We are a pediatric research center dedicated to discovering and sharing knowledge about best practices in pediatric care by facilitating, organizing and centralizing the performance of clinical effectiveness research -- research aimed at understanding the best ways to prevent, diagnose and treat diseases in children. CPCE’s multidisciplinary team conducts research on a diverse range of clinical effectiveness topics.

CPCE E-News is edited by Holly Burnside. Please feel free to contact us with questions or feedback.