February 28, 2020
In This Issue

Research Spotlight:
Opening Doors to Early Intervention through Community-Based Participatory Research

CPCE In the News:
‘Massive improvements’ seen in survival for children after kidney transplant

Upcoming Events

Recent Publications
Opening Doors to Early Intervention through Community-Based Participatory Research
Last week, James Guevara, MD, MPH and Sara Molina Robinson, Managing Director of the ChildLink and PersonLink programs for Public Health Management Corporation (PHMC), spoke about their experience with Community-Based Participatory Research (CBPR), as part of the CPCE and PolicyLab Faculty Seminar Series. Specifically, they discussed their work leading up to the current Opening Doors to Early Intervention (ODEI) Study, a randomized controlled trial operating at six practices in Philadelphia.

Dr. Guevara’s prior research on developmental screening investigated why families do not always follow through with Early Intervention (EI) services. Qualitative interviews with families revealed that they did not understand the severity of assessments correctly, preferred the advice of family members, wanted to work on their child’s skills on their own, or became frustrated with the EI process. Interviews with EI providers at ChildLink revealed that some families would also confuse EI services with Child Protective Services.

Community-Based Participatory Research is a philosophy for conducting research that involves partnerships with individuals and resources that are affiliated with the community. As is the case with the ODEI study, the partnership can be with organizations that provide resources in the community, such as ChildLink. Partners should be involved early in the process while researchers are identifying the problem and designing the protocol.

Dr. Guevara emphasized that community partnerships should be strategic and equitable. Partnerships should be a co-learning experience, in which researchers can share their study experience in exchange for “local knowledge,” a greater understanding of how a process works. When forming trusting, equitable community partnerships, it is also crucial to plan for sustainability. Interventions should build off of existing community resources and leave behind programs that can be sustained long terms after the study ends.

In the ODEI Study, Dr. Guevara and Ms. Molina Robinson are testing the effectiveness of patient navigators on families' follow through with EI. To further connect with the community, they chose patient navigators who had experience going through the EI process with their own children. Patient navigation aims to educate families about child development and EI, motivate them through the EI process, help them problem solve, and serve as a liaison when talking with EI. 
‘Massive improvements’ seen in survival for children after kidney transplant

A recent study published in the Clinical Journal of American Society of Nephrology showed improved survival after childhood kidney transplant over the past five decades. In an accompanying editorial, CPCE Core Faculty member Sandra Amaral, MD, MHS pointed out that while survival rates have improved over time, “there is [still] much work left to be done to secure optimal outcomes for youths with [end-stage kidney disease] ESKD,” with life expectancy for patients with ESKD estimated at 15-20 years less than the general population. "This study highlights the need for post-transplant care for children to be grounded in a CKD framework," Dr. Amaral wrote.

Upcoming Events

Emerging Therapies in a New Era of Care
Date: March 3, 2020
Time: 6:00 - 7:30 pm
Location: The Franklin Institute, 222 North 20th Street, Philadelphia
Penn Medicine bioethicist and pediatric oncologist Dr. Steven Joffe joins Franklin Institute’s Dr. Jayatri Das for a dynamic discussion exploring the promise and the realities of newer breakthrough therapies. Free, advance registration required.

Third Annual Penn DBEI & CCEB Research Day 
Date: March 18, 2020
Time: 9:00 am - 2:30 pm
Location: Penn Biomedical Research Building, 421 Curie Blvd
Penn's Department of Biostatistics, Epidemiology and Informatics and the Center for Clinical Epidemiology and Biostatistics will host their 3rd Annual Research Day. Sue Curry, PhD, will deliver the keynote lecture, "Population Health: Making Science Matter" at 1:30 pm. The day's agenda also includes in-depth looks at high-impact faculty research and trainee flash talks. Learn more and register here.

Causal Inference Summer Institute
Dates: June 22-25, 2020
Location: Jordan Medical Education Center 5th Floor Law Auditorium, 3400 Civic Center Blvd, Philadelphia
The Center for Causal Inference will host its fourth annual Causal Inference Summer Institute, a four-day, intensive learning experience that will take place at the Perelman School of Medicine, University of Pennsylvania. Each day will offer didactic lectures by experts in the field, discussion of real examples, and hands-on computing sessions. Learn more and register here.
Recent Publications

Through semi-structured interviews, Sandra Amaral, MD, MHS and her colleagues evaluated the content validity of the PROMIS Pediatric Pain Interference and Fatigue measures in children 8-17 years-old with Crohn’s disease and the PROMIS Pediatric Fatigue, Sleep Disturbance, and Sleep-related Impairment measures for children 8-17 with chronic kidney disease. Their results supports the content validity of several PROMIS Pediatric measures for children with Crohn’s disease and chronic kidney disease. PROMISE Pediatric measures, developed as universally relevant patient-reported outcomes, may be more broadly applicable to children with chronic disease.

To assess the relationship between vaccination status and clinician adherence to quality measures for children with acute respiratory tract illnesses, Chén Kenyon, MD, MSHP and his colleagues conducted a multi-center prospective cohort study of children aged 0 to 16 years who presented with 1 of 4 acute respiratory tract illnesses between July 2014 and June 2016. These included community-acquired pneumonia, croup, asthma, and bronchiolitis. They identified lower adherence to overuse quality indicators and higher adherence to underuse quality indicators for children not with provider-documented up-to-date vaccination status, suggesting that clinicians “do more” for hospitalized children who are not up-to-date on their vaccinations.

Other recent work by Chén Kenyon, MD, MSHP and his research team involved a retrospective longitudinal study to quantify the frequency of wheezing episodes and asthma diagnoses in young children in a large pediatric primary care network and assess the variability in practice-level asthma diagnosis, accounting for common asthma risk factors and comorbidities. They found that the adjusted incidence of asthma diagnosis by age 6 ranged widely. Potential sources of practice-level variation, such as differing diagnosis thresholds and labeling of different wheezing phenotypes as “asthma,” should be further investigated.

Registered nurses (RN) participate in delivery of routine pediatric preventative care. David Rubin, MD, MSCE, Emily Gregory, MD, MHS and their team ran a pilot cross-sectional survey of RNs from an urban/suburban pediatric primary care network to characterize variation in RN roles and overlap with other team roles. They found that RN staffing ratios varied twofold across offices. RNs spent more time on tasks that overlapped with medical assistant roles than tasks that overlapped with physician or nurse practitioner roles.

Kevin Downes, MD, Craig Boge, MPH, Kellie Liston, MSc, Susan Coffin, MD, MPH, and their colleagues conducted a multi-center retrospective cohort study of hospitalized infants under 60 days old to describe to epidemiology of and risk factors associated with acute kidney injury (AKI) during acyclovir treatment in neonates and infants. Among their cohort of infants exposed to acyclovir, the rate of AKI was low. Sicker infants and those exposed to additional nephrotoxic medications seem to be at greater risk for acyclovir-induced toxicity and warrant closer monitoring.

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.