July 19, 2019
In This Issue

Research Spotlight: What's New in Pediatric Rheumatology Research?

CPCE In the News:
Medicaid enrollment growth driven by families working for large employers, CHOP study finds

CPCE In the News:
Mental Health Issues Afflict Kids With Serious Illnesses

CPCE In the News:
AAP, ACOG group B strep guidelines replace CDC recommendations

Upcoming Events

Recent Publications
What's New in Pediatric Rheumatology Research?
Join us in congratulating Sabrina Gmuca, MD, MSCE for receiving a K Bridge Award from the Rheumatology Research Foundation for her project titled “Fostering Resilience in Adolescents with Chronic Musculoskeletal Pain (CMP).” The project aims to 1) evaluate baseline psychosocial factors associated with disease severity and treatment adherence at 6 months after diagnosis among adolescents with CMP, 2) conduct a randomized controlled trial of a resilience training intervention, PRISM (Promoting Resilience in Stress Management), and 3) evaluate patient and parent engagement in PRISM using a mixed-methods approach.

Dr. Gmuca and colleagues laid the groundwork for the K Bridge project with a recently published study that looked at resilience in CMP patients aged 13-17 years and their parents. Resilience in patients was correlated with reduced disease severity; and in parents, resilience was positively correlated with mental health. Audrey Urquhart, MPH, Pamela Weiss, MD, MSCE, and Jeffrey Gerber, MD, PhD, MSCE were co-authors.
Also join us in welcoming Joyce Chang, MD, MSCE to the CPCE Core Faculty. Dr. Chang is not new to CHOP, having completed internship and residency in Pediatrics and fellowship in Pediatric Rheumatology here before joining the Penn faculty as an assistant professor of Pediatrics. Dr. Chang’s research focuses include determining how children and teens with lupus use healthcare, and ways to prevent long-term problems from lupus/Mixed Connective Tissue Disease (MCTD), such as heart disease.

Recently, Dr. Chang and colleagues published a study investigating diastolic impairment in patients with pediatric-onset systemic lupus erythematosus (SLE), which is currently not well understood. They compared echocardiographic metrics of left ventricular diastolic function in children at SLE diagnosis to controls and found that the SLE patients had worse diastolic indices compared to controls. They suggest longitudinal studies to determine whether diastolic dysfunction develops in this population over time. Dr. Weiss and CPCE affiliate member Andrea Knight MD, MSCE ( now at the University of Toronto/SickKids) also contributed to this study.
Finally, in recognition of Juvenile Arthritis Awareness Month, we’re highlighting another recent study in which Dr. Weiss and colleagues sought to improve evaluation for sacroiliitis, or athritis of the lower back. Increasing reliance on MRI for the evaluation of sacroiliitis requires that radiologists be familiar with the normal appearance of the developing sacroiliac joint. MRIs from seventy healthy children from three age groups (8-10 years, 11-13 years, and 14-17 years) obtained for this study provide reference points in order to better distinguish between normal and pathological findings. Tim Brandon, MPH is a co-author on the study.
Medicaid enrollment growth driven by families working for large employers, CHOP study finds

In its July issue, Health Affairs published a research article by our PolicyLab colleagues Doug Strane, MPH, Meredith Matone, DrPH, Ahaviah Glaser, JD, and David Rubin, MD, MSCE along with Genevieve Kanter, PhD, of the Leonard Davis Institute of Health Economics at Penn. The study looked at children's enrollment in public insurance (Medicaid and the Children's Health Insurance Program, CHIP) and parents' employment in three categories: small private firms less than 200 employees, large private firms more than 200 employees, and the public sector. From 2008 - 2016, enrollment in Medicaid and CHIP increased for children of low- and middle-income families across all types of parental employment. What surprised the authors, however, was that the largest contributor to this increase was by children from low- and middle-income families who had at least one parent employed by a large, private firm. “These are our largest employers, who should have the benefit of being able to average that risk off a larger employee pool. Their plans are no longer affordable,” Dr. Rubin told The Philadelphia Inquirer.

Mental Health Issues Afflict Kids With Serious Illnesses

CPCE Core Faculty members Lisa Schwartz, PhD and Chris Feudtner, MD, PhD, MPH teamed up to write an editorial in JAMA Pediatrics accompanying a meta-analysis of mental health in children with life-limiting illnesses. The meta-analysis included 37 studies published from 2000 to 2018 involving just over 6,000 individuals ages 5 to 25 with cancer, cystic fibrosis, HIV, thalassemia or other conditions. Patients in these populations had a far higher prevalence of depression and anxiety compared to young people in the general U.S. population. While there was variability across conditions, the results overall highlight the need for better assessment and access to mental health treatment. "[W]e believe that developing the capacity within sites of pediatric specialty care for integrated and fairly comprehensive medical and behavioral services for patients with [serious pediatric illness] is an urgent necessity," they wrote.

AAP, ACOG group B strep guidelines replace CDC recommendations

CPCE Core Faculty member Karen Puopolo, MD, PhD co-authored new American Academy of Pediatrics (AAP) guidance for early-onset and late-onset group B streptococcal (GBS) disease. The American College of Obstetricians and Gynecologists (ACOG) published separate but aligned guidance for maternal management of GBS. The collaborative reports replace 2010 guidance from the Centers for Disease Control and Prevention (CDC).

Upcoming Events

The Future of Nursing 2020-2030 Town Hall
Date: July 24, 2019
Time: 8:30 AM - 12:30 PM
Location: University of Pennsylvania School of Nursing, 418 Curie Blvd
The Committee on the Future of Nursing 2020-2030 under the auspices of the National Academies of Sciences, Engineering, and Medicine is holding town hall meetings to hear insights on how to advance the profession of nursing to help our nation create a culture of health, reduce health disparities, and improve the health and well-being of the U.S. population in the 21st century. Each meeting will feature panel discussions around a specific topic, followed by time for public comments. the Philadelphia regional meting will focus on the theme of Payment and Care for Complex Health and Social Needs. Attend in person or online, or join the Twitter Chat. Learn more here.

Symposium on Gram Negative Bacteria Resistance
Date: July 31, 2019
Time: 8:30 AM - 6:00 PM
Location: The Wistar Institute, 3601 Spruce Street
The conference focuses on pathophysiology and prevention of Gram-negative bacteria. The goal is to bring together leading investigators in the field for in depth discussions on the current global state of infections that drive anti-microbial resistance (AMR). Perspectives to be covered include strategies to exploit novel bacterial vulnerabilities, updates on cutting-edge approaches towards Gram-negative infections and the next steps in combating AMR. Learn more and register here.

Global Health in Our Own Backyard: Controversies, Initiatives, and Innovations for Our Local Underserved Populations
Date: October 4-5, 2019.
Location: Colket Building
Registration is now 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. For more information, click here.
Recent Publications

For adolescent and young adult (AYA) survivors of childhood cancer, it can be a challenge to provide developmentally appropriate long-term follow-up care (LTFU). These cancer survivors are at risk for psychological distress, knowledge gaps, and problems with access to health insurance and age-appropriate healthcare, among others. Ensuring follow-up care attendance is another struggle faced by AYA cancer survivors, as they may be unwilling or unable to continue this type of care. Lisa Schwartz, PhD, and colleagues led focus groups to understand AYA and parent experiences and preferences for survivorship care delivery during vulnerable healthcare transitions. This study found that understanding the perceptions of LTFU care for patients and their families can help to promote continuous engagement in care, target unmet needs, and promote health though survivorship models that are acceptable for all. 

Electronic health records are ubiquitous in the practice of medicine, and can improve care through ease of ordering medications and diagnostic tests, and providing physicians, nurses, and patients with more timely information than when using paper records. EHRs are legible, provide greater awareness of patients’ health status, and deliver automated decision support. However, EHR use can cause problems especially in terms of usability, which is the extent to which the technology can be used efficiently and effectively, and how it’s customized in the clinical environment to the specific workflows that clinicians employ. Errors in EHRs have a greater potential for negative outcomes for pediatric patients, as these patients are less tolerant of even small errors or delays in care. To address potential barriers to appropriate and safe care for pediatric patients, Robert Grundmeier, MD and Naveen Muthu, MD contributed to a study to identify specific types of EHR usability issues and associated medication errors. They found that more than 35% of patient safety reports were related to usability issues such as visual display challenges, and recommend safety as part of the voluntary certification criteria of EHRs for use with children. 

Adverse pregnancy outcomes like preterm birth (PTB) and low birth weight put infants at risk for a variety of health conditions throughout their lives, and have been associated with future cardiovascular disease among women. There are racial/ethnic and socioeconomic disparities in adverse pregnancy outcomes. This study, led by Stephanie Mayne, PhD, MHS, interrogated the connections between parent and infant health, including hypertensive disease of pregnancy (HDP) and neighborhood crime. In neighborhoods with higher crime rates, there were small but significant increases in the odds of adverse pregnancy outcomes, suggesting that interventions that promote safer neighborhoods may be a promising approach for improving pregnancy outcomes. 

Celiac disease can reduce bone density, and is one of the most common causes of intestinal malabsorption in childhood. Mary Ellen Vajravelu, MD, MSHP, contributed to a study to determine prevalence and risk factors for low areal bone mineral density (aBMD) in children with celiac disease. They found that approximately 7% of subjects with celiac disease had a low aBMD-Z score, which was three-fold higher than expected from this population. Additionally, higher body mass index (BMI) was associated with lower odds of a low aBMD-Z score. BMI-Z scores could be used to identify children with celiac disease at risk for low BMD who should receive screening. 

In roughly 10% of pregnancies, hypertensive disorders (HD) are present, and are a well-recognized risk factor for maternal death and perinatal morbidity during the intrapartum and postpartum period. Dustin Flannery, DO, and his collaborators carried out a study to evaluate if HD in mothers is associated with a reduced risk of severe intraventricular hemorrhage (IVH) in very-low-birth-weight infants (VLBW). They found VLBW infants born to mothers with HD during pregnancy have a significantly reduced risk of severe IVH and bronchopulmonary dysplasia (BPD), and shorter duration of hospitalization. 

Over the past decade, pediatric emergency department (ED) use for mental health (MH) conditions has risen dramatically. There are resource impacts on EDs, as mental health visits are longer, more likely to be triaged to urgent evaluation, and result in more admissions, transfers, and readmissions compared to non-MH visits. Assessment may also be a challenge for ED clinicians without psychiatric training. Stephanie Doupnik, MD, MSHP, and colleagues examined trends in MH visits to pediatric emergency departments, and sought to identify the impacts of a hospital inpatient psychiatric unit (IPU) on ED disposition. There were differences in hospitalization and transfer rates when an IPU was present. Future studies should explore whether care in these EDs with an IPU leads to more effective care of MH conditions, and whether costs would be reduced through decreased repeat ED visits or psychiatric hospitalizations. 

Roughly 1% of youth in the United States identify as transgender; Gender nonconforming (GNC) and transgender youth (TY) have unique and specific health care needs, stemming in part from discrimination and stigma towards this population. Because health insurance policy does not mandate coverage of medically necessary transition-related services, transgender and GNC youth and their families must shop around for insurance policies offering the coverage they need. Nadia Dowshen, MD, MSHP , led a study to assess the online accessibility and indication of coverage of recommended medical and mental health services for transgender youth by major payors. They found that fewer than half the plans studied indicated coverage of any service and nearly half of the plans indicated transgender-specific exclusions. Accessibility of online information was poor; the average plan review time was nearly one hour for medical student research assistants familiar with plan information and medical language. Education of insurance payors is needed to ensure appropriate coverage and accessibility of plan information for TY and their caregivers. 

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.