May 29 2015

Filling Prescriptions After Asthma Hospitalization Reduces Readmissions

AsthmaImagine the following scenario: you or your child are hospitalized, and upon discharge are given a prescription by your doctor to treat the underlying condition. And, hopefully, to prevent you or your child from having to be hospitalized again. Sound simple, right?

Unfortunately, patients and their families don’t always fill their prescriptions, even if not doing so means they could end up in the hospital again. New work published in The Journal of Pediatrics shows just over 50 percent of a large cohort of pediatric patients filled beta agonist and oral steroid prescriptions after being hospitalized for asthma, and fewer than 40 percent filled inhaled steroid prescriptions.

The study was led by PolicyLab‘s Chén Kenyon, MD, MSHP and Director of Research for CHOP’s Pediatric Advanced Care Team, Chris Feudtner, MD, PhD, MPH. The study fits into one of PolicyLab’s broad areas of investigation, improving health care delivery.

One of the most common diseases of childhood, asthma is one of the leading reasons children seek medical attention. According to 2013 CDC data, 8.3 percent of U.S. children under the age of 18 have asthma, and in 2011 there were 1.8 million emergency department visits for asthma-related causes.

The NIH’s National Asthma Education and Prevention Program guidelines recommend patients who have been hospitalized for asthma be given several medications, “including continuation of inhaled short-acting beta agonists and oral steroids, along with continuation or consideration of initiation of a preventative controller medication such as an inhaled corticosteroid,” the study’s authors note.

However, adherence to these guidelines has not been evaluated broadly, and prescribing and fill rates vary. So with this study the investigators sought to determine the percentage of patients who actually filled prescriptions following hospitalization, and what effect filling prescriptions had on readmission rates.

Using Medicaid data, Drs. Kenyon and Feudtner identified a total of 31,658 children aged 2 to 18 years across the U.S. who were admitted for asthma between January 1, 2006 and September 3, 2007. The researchers found roughly 55 percent of children filled beta agonist or oral steroid prescriptions within three days of discharge, while 37 percent filled prescriptions for inhaled steroids. After including inhaler fills that occurred in the month prior to hospitalization, rates for beta agonist fills increased to 67 and 45 percent for inhaled steroids.

With fill rates in hand, the researchers then turned to readmission rates. They found patients who filled beta agonist and inhaled steroid prescriptions had lower readmission rates within 14 days of discharge. Oral steroids were also associated with a slight drop in readmission rates.

“Those who filled prescriptions for short-acting beta agonists and inhaled steroids experienced early readmission less frequently than children who did not, and those who filled inhaled corticosteroids experienced 15- to 90-day readmission less frequently than those who did not,” the authors note.

“These results may not surprise many, but few practices have been shown to reduce hospital readmissions,” said Dr. Kenyon. “Though this is a retrospective study that cannot confirm causality, these findings offer a compelling connection between something relatively straightforward that we can do at the time of discharge (make sure patients have their medications in hand) and better outcomes.”

In the era of accountable care, all healthcare stakeholders stand to benefit from such a practice,” he added.

To learn more about asthma care and research at The Children’s Hospital of Philadelphia, see the Asthma Program and PolicyLab’s website.

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May 27 2015

Award Celebrates CHOP Expert’s Brain Tumor Research

brain tumor

Neuro-surgery, Neuro-Oncology ,Pathology and Research teams celebrate Brain Tumor Awareness month!

At the 13th Annual Dream & Promise Gala, set to be held tonight in New York, the Children’s Brain Tumor Foundation will honor The Children’s Hospital of Philadelphia’s Tom Curran, PhD, FRS, with the 2015 Fred J. Epstein, MD, Lifetime Achievement Award.

The award, which is named after the late Fred J. Epstein, MD, a pioneer in the field of pediatric neurosurgery, honors Dr. Curran’s work elucidating the molecular underpinnings of brain growth with an eye toward discovering novel treatments for pediatric brain tumors.

In particular, Dr. Curran’s work on medulloblastoma — the most common form of malignant brain tumor in children — led to the approval of the drug Erivedge (vismodegib). Approved to treat metastatic basal cell carcinoma, Erivedge is also being investigated as a treatment for a range of other cancers, from medulloblastoma to gliomas to colorectal cancer.

In addition to his position as Deputy Scientific Director of The Children’s Hospital of Philadelphia Research Institute, Dr. Curran is also a professor of Pathology and Laboratory Medicine in the University of Pennsylvania’s Perelman School of Medicine. Originally from Scotland, he received his PhD from London’s Imperial Cancer Research Fund Laboratories and University College before going on to a postdoc at the Salk Institute. He is a member of the American Academy of Arts and Sciences, the Institute of Medicine, and is a Fellow of the Royal Society.

Dr. Curran also helps lead the Children’s Brain Tumor Tissue Consortium (CBTTC). Founded with support from the CBTF, the CBTTC is a multi-institutional, collaborative research organization dedicated to the collection, annotation, and analysis of children’s brain tumors.

The CBTTC’s current work falls under four areas. Three projects are investigations of specific types of brain tumors — craniopharyngiomas, diffuse fibrillary astrocytomas, and ganglioglioma — while a fourth is focused on better understanding pediatric and adult gliomas. Much of the consortium’s work involves genomic sequencing, which is performed at Children’s Hospital in the BGI@CHOP sequencing facility.

“This award from the CBTF is a great honor, but it is really a recognition of the entire brain tumor team at the CBTTC — not just a single person,” said Dr. Curran. “Cooperation and sharing are the driving principles of the Children’s Brain Tumor Tissue Consortium.”

To learn more about the Children’s Brain Tumor Foundation, see their website. For more information about brain tumor-related research at CHOP, see the CBTTC site or the Center for Childhood Cancer Research.

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May 26 2015

Fresh Whole Blood Lowers Child Heart Surgery Exposure Risk

heart surgeryInfants and children who undergo heart surgery are better off receiving fresh whole blood transfusions from a single donor, compared to receiving component blood from multiple donors, according to new research from The Children’s Hospital of Philadelphia.

“Using fresh whole blood for transfusions reduces the number of individual blood donors to which patients are exposed,” said the study’s leader, David R. Jobes, MD, a cardiothoracic anesthesiologist in the Cardiac Center at CHOP. “The risks of transfusion reaction are most significantly linked to donors, so limiting such exposure will benefit patients.”

Well-recognized transfusion risks include allergic reactions, fevers, lung injury, and the transmission of infectious disease. Dr. Jobes and colleagues published their findings in the May 2015 issue of the Annals of Thoracic Surgery.

The research team did a retrospective study of 4,111 children receiving heart surgery at CHOP from 1995 to 2010. Of that number, 3,836 patients received fresh whole blood and 252 received only blood components. Since 1995, CHOP has provided fresh whole blood in heart surgery patients, relying on components only when whole blood was not available. Previous experience at CHOP had shown that using whole blood in heart patients reduced blood loss and lowered the need for subsequent transfusions.

In the current study, the median number of exposures was two donors, with higher numbers for younger patients having complex surgeries. For all the subgroups, the number of exposures was lower than amounts reported in scientific literature for pediatric cardiac patients who received blood components. The current practice in nearly all pediatric cardiac surgical programs is to rely solely on blood components.

“Many congenital heart conditions necessitate multiple surgeries beginning in infancy, and require multiple transfusions over a patient’s lifetime,” said Dr. Jobes, “so limiting donor exposures from the start may reduce long-term complications from blood transfusions.”

“We hope this research encourages officials to re-examine current blood storage practice and make logistical changes to make whole blood more readily available for pediatric heart patients,” Dr. Jobes added.

To learn more about cardiac care and research at CHOP, see the Cardiac Center website.


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May 21 2015

Research Needed to Address Unique Health Needs of Adolescents With HIV

HIVEvery day Sarah M. Wood, MD, a Fellow in the Craig-Dalsimer Division of Adolescent Medicine at The Children’s Hospital of Philadelphia, is stunned by the resilience and strength of the young people she works with who are living with human immunodeficiency virus (HIV) and the obstacles that they overcome. Yet, they have fallen into an extremely vulnerable space.

At this point in time, about 2.1 million adolescents worldwide are living with HIV. While recent data has shown that AIDS-related mortality declined from 2005 to 2012 for adults and children, adolescent mortality has increased by 50 percent. What is creating such a huge equity gap in treatment for adolescents?

In an editorial published in JAMA Pediatrics, Dr. Wood and colleagues suggest that adolescents living with HIV are a “generation at stake.” A significant barrier to achieving their optimal care is that youth with HIV who are older than 13 often are treated as adults, which fails to recognize that adolescence is a unique and distinct transition of physical, psychosocial, and neurocognitive development. These years also are a crucial time for youth who are not yet HIV positive but are at high risk for infection.

“They are still developing their brains, and they are subject to intense social pressures,” Dr. Wood said. “Those things can work together for youth who are not yet infected with HIV to increase their risk of becoming HIV positive through risk-taking behaviors. Or, for youth who have been born with HIV, their adherence to antiretroviral therapy is going to face significant challenges during this adolescent period.”

As an adolescent medicine expert, Dr. Wood recognizes that the concept of future orientation — teens’ ability to think about how poor adherence when they are feeling well will eventually impact their future health — is a difficult concept for most teens with chronic conditions to grasp. But that should not relegate the teen years as a tumultuous time of bad choices. Instead, she said, we must begin to prioritize adolescent HIV care as a “dynamic process of overlapping stages” and develop systems tailored to help youth navigate this continuum.

Then researchers can begin to pinpoint and pilot test interventions targeted at different levels of that cascade:

  • finding youth who are HIV positive
  • increasing uptake of testing
  • facilitating linkage to care interventions
  • looking at the barriers to prescribing antiretroviral therapy
  • identifying the challenges and facilitators for adolescents to stay in care and adhere to antiretroviral therapy throughout their life cycle.

Dr. Wood especially is interested in exploring how to use and strengthen adolescents’ social support, which includes family, partners, and other people in their social network, to make improvements in these areas. Part of a program at CHOP called the Adolescent Initiative uses an integrated, medical case management model that emphasizes social support when helping youth to become more knowledgeable and competent in managing their HIV. Oftentimes, this means working with youth who have been left homeless due to stigma and discrimination related to their sexual orientation or gender identity.

“We’re doing work to optimize the social support that adolescents have because we can care for them while they’re in the clinic, but in the month or months in between when we see them, they must rely on the support that they have in their lives to be able to sustain treatment,” Dr. Wood said. “Many of our youth are thinking about where are they going to sleep that night and how are they going to eat. The stress of survival may outweigh their ability to think about taking a medication.”

Hearing firsthand from youth living with HIV about their daily difficulties has prompted Dr. Wood to pursue some important research questions: What factors in adolescents’ lives may challenge their ability to stay adherent to their therapy and stay suppressed from a viral load standpoint? And over time, how does housing, social support, substance abuse, and mental illness play into our ability to provide optimal care for youth living with HIV? Another one of her research priorities is looking at ways to increase uptake of HIV pre-exposure prophylaxis.

“We live in an amazing time,” said Dr. Wood, who has 17 years of experience in the area of HIV and sexual health preventative care. “Keeping people adherent with their antiretroviral therapy can reduce their risk of transmitting to their partners. But we also now know that we can give antiretroviral medicine to our negative youth and keep them from becoming HIV positive.”

Prior to starting Adolescent Medicine fellowship, Dr. Wood was a site investigator at CHOP for Project PrEPare, which aims to examine the acceptability and feasibility of daily medication to prevent HIV for young men who have sex with men. The study began in 2012 and included approximately 100 participants between the ages of 15 and 17 from 12 cities across the U.S. Now in its final stages, the project is a prime example of adolescent-specific research that will be essential to advancing HIV care and prevention for youth in years to come.

“We need to begin to build an adolescent care competent world in HIV,” Dr. Wood said.

Project PrEPare was organized by the Adolescent Trials Network for HIV/AIDS Interventions, a research network fund by the National Institutes of Health that develops and implements intervention trials for HIV positive and at-risk adolescents.

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May 20 2015

Pilot Grant to Support Genetic Eosinophilic Esophagitis Investigation

Eosinophilic EsophagitisThe Children’s Hospital of Philadelphia’s Antonella Cianferoni, MD, PhD, recently received a two-year, $140,000 grant from the American Partnership for Eosinophilic Disorders (APFED) and the Allergy, Asthma & Immunology Education and Research Organization (ARTrust) to study the genetic underpinnings of the severe food allergy eosinophilic esophagitis (EoE).

Given annually since 2013, the Hope APFED/ARTrust Pilot Grant awards help “initiate projects relevant to eosinophil-associated diseases, with a focus on the development of new and inventive ideas that are likely to lead to future external funding and better patient outcomes,” according to APFED’s site. Past winners of the award include Boston Children’s Hospital’s Michiko Oyoshi, PhD, and Seema Aceves, MD, PhD, of the University of California, San Diego.

Only recognized in the last twenty to thirty years, EoE is marked by inflammation and painful swelling in the esophagus, along with high levels of immune cells called eosinophils. It can affect people of any age, but is more common among young men who have a history of other allergic diseases such as asthma and eczema. Children with EoE experience varying symptoms including belly pain, trouble swallowing, uncontrollable reflux, and failure to thrive.

After receiving her MD and then PhD from the University of Florence, Dr. Cianferoni completed fellowships at Johns Hopkins University and Boston Children’s before coming to Children’s Hospital and the University of Pennsylvania’s Perelman School of Medicine. Much of her work has been centered on food allergy pathogenesis.

Last year Dr. Cianferoni published a pair of papers with Jonathan Spergel, MD, PhD, co-director of CHOP’s Center for Pediatric Eosinophilic Disorders. One, published in Immunotherapy, reviewed immunotherapeutic approaches to treating EoE, while a second paper published in Expert Review of Clinical Immunology examined the role the protein thymic stromal lymphopoietin plays in allergic disease. She also contributed to a Nature Communications study led by the Center for Applied Genomics’ Hakon Hakonarson, MD, PhD, that identified four new genes associated with EoE.

“This award will allow me to focus my research on understanding which role genetic variations play in each individual patient, potentially making it easier in the future to predict the best therapy to use in a single patient based on his/her own genetic makeup,” said Dr. Cianferoni when the award was announced.

To read more about Dr. Cianferoni’s award, see APFED’s press release page. For more information about eosinophilic esophagitis and related disorders, visit the Center for Pediatric Eosinophilic Disorders.

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May 19 2015

Children With Nightly Bedtime Routines Have Better Sleep Outcomes

bedtime routineSweet dreams. G’nite. Shubh ratri. No matter how you say it, a consistent bedtime routine makes a difference in children’s sleep outcomes, according to a study that included mothers of 10,000 young children from 14 countries.

Sleep problems in children are a common concern among parents, and increasing evidence suggests that inadequate sleep can lead to behavioral and cognitive consequences. Most parenting books and pediatricians recommend a bedtime routine as an effective way to improve children’s sleep difficulties, but this research is the first to demonstrate its importance in a dose-dependent way.

“With each additional night that a family institutes a bedtime routine, their child’s sleep is better,” said Jodi A. Mindell, PhD, associate director of the Sleep Center at The Children’s Hospital of Philadelphia, who reported the results in the journal Sleep. “It was a universal finding. We found it across a multitude of countries, which is amazing.”

Dr. Mindell and her co-investigators collected the data online from a questionnaire offered on a popular parenting website and through emails. The questions asked mothers of children ages 0 to 5 about their child’s daytime and nighttime sleep patterns and behaviors.

Overall, the results suggest that a regular nightly bedtime routine is associated with earlier bedtimes, shorter time needed to fall asleep, fewer awakenings after sleep onset, more total sleep, decreased parent-perceived sleep problems, and decreased daytime behavior problems. They also found that children who start sleep routines as infants are likely to have better sleep outcomes as they grow into toddlers and preschoolers.

“This is a clear message that for every family a bedtime routine should be recommended,” Dr. Mindell said. “A pediatric practitioner should ask how many nights a week they do it, and then encourage them to try to increase it, even it’s just by one night.”

In future studies, the researchers would like to take a closer look at which activities before lights out are most effective at improving children’s sleep. For example, does a relaxing bath before bed or reading a book result in better outcomes? Or, on the other hand, does an energetic 2-year-old benefit from more lively engagement before being tucked in?

“Sometimes I think it is frustrating for families because they have a hard time making bedtime calm for a child who has a lot of energy and won’t sit still for books,” Dr. Mindell said. “Maybe it’s OK to have a more active aspect of your bedtime routine, as long as it’s done every night and it’s an effective signal to your child. We don’t know yet.”


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May 15 2015

Research at CHOP: It’s Not Just a Job, It’s an Adventure!


External Keynote: Ronald M. Evans, PhD, of the Salk Institute

Bookended by references to the 1980s and 1990s — in the form of an iconic U.S. Navy commercial and a discussion of the 1991 measles outbreak in Philadelphia — the 2015 CHOP Research Institute Scientific Symposium offered a snapshot of the inspirational work going on at CHOP every day. Researchers from a variety of disciplines gave talks on everything from the challenges intrinsic to running a large research enterprise, to the human microbiome, to traumatic brain injury.

The day started off with a presentation from Dennis Durbin, MD, MSCE, director of CHOP Research’s Office of Clinical and Translational Research (OCTR). Dr. Durbin, who took OCTR’s reins a little more than a year ago after many at the Center for Injury Research and Prevention, is a recognized leader in pediatric injury prevention research. Discussing his time at the helm of OCTR, Dr. Durbin compared the work of aiding investigations to the aforementioned Navy commercial, the tagline of which is “Navy. It’s not just a job, it’s an adventure”.

The morning’s first session saw two more presentations, including one from gene therapy expert Beverly Davidson, PhD, whose talk was largely focused on the neurodegenerative disorder Huntington’s disease. Characterized by uncontrolled movements and progressively worsening mood issues and cognitive abilities, the condition affects approximately 10 to 17 per 100,000 live births. Dr. Davidson and her team have been investigating using gene therapy to treat Huntington’s disease in animal models.

Dr. Davidson’s presentation set the tone for much of the rest of the day, as many symposium presentations were highly focused, often basic, microbiological, immunological, and genetic investigations. An exception was the presentation by the Center for Injury Research and Prevention’s Yi-Ching Lee, PhD, on her work developing computational techniques to model teen drivers’ behaviors.

Let’s Do Lunch

The timing of the symposium’s external keynote speech — by Ronald M. Evans, PhD, of the Salk Institute — was particularly appropriate this year. As attendees ate lunch, Dr. Evans gave a talk on nuclear receptors, a class of proteins that play a key role in metabolism.

A faculty member at the Salk Institute since 1978, Dr. Evans has also been a Howard Hughes Medical Institute investigator since 1985. His numerous awards and honors include a 2004 Albert Lasker Basic Medical Research Award and the 2012 Wolf Prize in Medicine.

During his speech, Dr. Evans discussed the research that led to the development of fexaramine, and investigational compound developed in his laboratory that, per the Salk Institute, “tricks the body into thinking it has consumed calories, causing it to burn fat.”

In short, fexaramine, “reduces diet-induced weight gain, body-wide inflammation and hepatic glucose production,” write Dr. Evans and colleagues in a February Nature Medicine study. The drug’s “pronounced metabolic improvements suggest tissue-restricted FXR activation as a new approach in the treatment of obesity and metabolic syndrome,” the authors write.

After lunch, attendees settled in for a series of talks about vaccinology, genetics, neurology, and oncology. A highlight was the presentation given by former Research Institute Chief Scientific Officer Philip R. Johnson, MD, on his lab’s work developing an HIV vaccine. Dr. Johnson’s efforts have led to a Phase 1 clinical trial sponsored by the International AIDS Vaccine Initiative to study the safety of the vector carrying the broadly neutralizing antibody PG9, which has been shown to protect against HIV.

And last, but most certainly not least, the day’s events were capped off by a presentation by Paul A. Offit, MD. Perhaps CHOP’s best-known vaccine advocate, Dr. Offit is co-creator of the rotavirus vaccine Rotateq, director of CHOP’s Vaccine Education Center, and author of numerous books, the latest of which is Bad Faith: When Religious Belief Undermines Modern Medicine.

Dr. Offit’s talk, “The Philadelphia Measles Epidemic: Lesson from the Past or Prologue to the Future,” discussed the 1991 Philadelphia measles outbreak in depth, with a focus on the role several churches played in the outbreak. Though it was largely dormant in the U.S. for many years, measles seems to be somewhat resurgent, with 166 cases diagnosed between January 1 and April 24, 2015, in the District of Columbia and 17 states across the U.S., according to the CDC. The recent rise in measles cases is largely due to children and adults not being vaccinated.

“The reason that we’re hearing about these epidemics is because parents aren’t vaccinating their children because they’re not scared of the disease,” Dr. Offit said. “But I am.”

To learn more about the day, and to see the entire 2015 CHOP Research Institute Symposium’s lineup of presentations, check out the Symposium web page.



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May 14 2015

The Brain is Important: CHOP Expert Discusses False Brain Tumor Syndrome

brain tumor

PTCS is most often seen in obese women of childbearing age; this predilection is also seen in late adolescents, Dr. McCormack pointed out.

The work of The Children’s Hospital of Philadelphia’s Shana E. McCormack, MD, was recently featured on Pediatric Research’s “Pediapod” podcast. Dr. McCormack spoke to host Charlotte Stoddart about her review of pseudotumor cerebri syndrome, also known as false brain tumor, in which patients experience the symptoms of a brain tumor despite not having one.

The condition, said Dr. McCormack, is “caused by an increase of the pressure in the fluid surrounding the brain, the cerebrospinal fluid, and it occurs in the setting of that increased pressure but without an actual tumor or other apparent cause of pressure around the brain.”

If left untreated, pseudotumor cerebri syndrome (PTCS) can lead to permanent vision loss, she noted. Precisely what causes the increase in pressure remains an area of investigation, and can develop as consequence of obesity or other conditions, hormonal associations, anemia, and vitamin toxicities, Dr. McCormack said.

“The brain is a really important organ. It’s sensitive to high pressure, but it finds itself in a closed box, a closed space, it finds itself in a skull,” she noted. “So if the pressure goes up by a little, that’s a big risk to the brain, so the brain has several really important conserved mechanisms for maintaining normal pressure in the brain, but we don’t really understand what they are.”

PTCS is most often seen in obese women of childbearing age; this predilection is also seen in late adolescents, Dr. McCormack pointed out. However, the situation in children is different.

“What’s really interesting is that before puberty, instead of being a predominantly female condition there’s an equal mix of affected girls and boys. And before puberty children tend not to be obese, children tend to be normal weight. So it adds to the complexity of understanding this condition, that it changes so significantly over the lifespan.”

The podcast follows Dr. McCormack’s publication of a review of PTCS, in which she and Children’s Hospital’s Grant T. Liu, MD, among others, examined the mechanisms of how the condition arises, hypothesizing that mitochondrial metabolites — which have been shown to regulate fluid in the kidneys — could play a key role in pseudotumor cerebri syndrome.

Though she cautioned treatments are not immediately forthcoming, Dr. McCormack did say work like the Pediatric Research review could be a “springboard” to future work.

“I think we are closer to designing the kind of studies that will produce helpful biomarkers,” Dr. McCormack said. “As a pediatric clinician if I could come up with a blood test to measure cerebrospinal fluid pressure … I think that would really be amazing and would really be a benefit to our patients.”

For more, listen to the whole podcast with Dr. McCormack here.

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May 13 2015

Community Scholar Project Addresses Needs of Gender Variant Youth

gender youth variantTransgender, gender non-conforming, and gender variant youth oftentimes are misunderstood or ignored when they try to get the attention of healthcare providers. Pediatrician and adolescent medicine specialist Nadia Dowshen, MD, founder and co-director of The Children’s Hospital of Philadelphia’s Gender and Sexuality Development Clinic, wants to help alleviate the frustration of these marginalized youth by improving their access to health resources and services.

“This care is really a matter of life and death,” said Dr. Dowshen, who also is a faculty member at CHOP’s PolicyLab and serves as director of Adolescent HIV Services in the Craig-Dalsimer Division of Adolescent Medicine at CHOP. “Among people who are transgender, 40 percent have attempted to commit suicide at some point in their life, which are numbers that are staggeringly high. We need to do a better job of identifying who these youth are and offering support.”

In order to accomplish this, Dr. Dowshen has been selected to participate in the 2015-2016 inaugural cohort of the Community Scholars-in-Residence Program, a collaboration that includes CHOP and the University of Pennsylvania’s Community Engagement and Research Core, School of Nursing, Office of Inclusion and Diversity, Center for Public Health Initiatives, and the Implementation Science Working Group. The program is designed to provide exceptional junior faculty with dedicated time, mentoring, and support so that they can pursue research projects that cultivate engagement with community partners.

“The ultimate goals are to demonstrate that these kinds of resources and support can improve the quality and quantity of research funding, scholarship, and translation to improve population health,” said Karen Glanz, PhD, MPH, George A. Weiss University Professor and director of the UPenn Prevention Research Center. “This is a pilot program that we hope to build on for the future. We’re excited that our first cohort of Scholars includes Dr. Dowshen, who has already initiated productive research collaborations in the community.”

Over the next two years, Dr. Dowshen will work with the City of Philadelphia Department of Public Health’s Division of Maternal, Child, and Family Health (MCFH) to gain insights from the thoughts and experiences of transgender and gender non-conforming youth and other key stakeholders. She will use this information to increase healthcare providers’ knowledge and increase access to needed services.

“In order to develop programs and policies that will improve health outcomes among marginalized youth, I believe that our key stakeholders — the youth themselves and those in the community who work closely with them — need to be involved in all aspect of the research process in order for the research to be relevant and implementation of findings to be successful,” Dr. Dowshen said.

For the first part of the project, Dr. Dowshen and her colleagues at the MCFH will interview these adolescents, their parents, and community groups to identify and summarize their healthcare needs. The study team also will compile national policies that affect transgender and non-conforming youth and determine how they apply practically in the Philadelphia area. These steps will lead to the formation a community advisory board.

The second part will be to survey providers both throughout the CHOP Care Network and within the city health department clinics about their knowledge, attitudes, and practices with transgender and gender non-conforming youth. Based on the responses, Dr. Dowshen will identify focus areas for a curriculum to train the providers on ways that they can help to better care for this patient population.

“We know that when they do have the support of a multidisciplinary team of medical and mental health providers and a family and community, that gender non-conforming youth can grow up to be happy and healthy, productive adults,” Dr. Dowshen said.

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May 12 2015

Improving Asthma Care With Shared Decision-Making

shared decision makingA quick search for the term “shared decision-making” on PubMed (the US National Library of Medicine’s study database) shows an interesting progression. The term first appears in the title of a 1968 paper on education, and then in five studies in the 1970s. Likewise, it appears in only two papers in the 1980s. Fast forward to 2012, and “shared decision making” is included in the titles of 104 papers; in 2013 it appears in 126 studies; in 2014, 173 papers; and through March 2015, it has already been the focus of 42 studies.

Clearly then, the concept of shared decision-making (SDM) — in which patients and clinicians work together to make choices — has gained steam since it was first used. The Children’s Hospital of Philadelphia’s Alexander G. Fiks, MD, MSCE, has been on the leading edge of SDM-related research, contributing to a total of 10 SDM papers since 2010. Much of Dr. Fiks’ research has been focused on using technology — such as electronic health records (EHRs) — to improve outcomes for pediatric patients

His latest is a Pediatrics study of an SDM Internet portal focused on asthma. Known as MyAsthma, the portal is a modification of Children’s Hospital’s MyCHOP site, which allows patients and families to request appointments, view medications, and see their child’s growth charts, among other things.

In the current study, Dr. Fiks and colleagues studied the acceptability, feasibility, and impact of MyAsthma. The researchers conducted a six-month trial in which they enrolled 60 families, 30 of whom were randomized to an intervention group who had access to the MyAsthma portal and received training on its use, as well as periodic reminders to use it.

The portal, which is linked to patients’ EHRs, features tools to track symptoms; a timeline of asthma control assessments; asthma educational information, such as videos on asthma triggers and medications; and details on each patient’s care plan and team. Families who used the portal were sent e-mail reminders to complete surveys.

Based on surveys both groups of patients, the researchers found that not only was the portal feasible — with more than 77 percent of the intervention group completing more than one survey — but also that it was acceptable to the majority of families. Many reported that the portal “made it easier to care for their child’s asthma, and that they were satisfied with the portal,” the researchers write.

“It made me more aware of how serious his asthma could get if he did not maintain his medication administration,” one parent reported in the Pediatrics study.

In addition, families randomized to use the portal reported fewer visits to the emergency department, and saw a slight decrease in the number of school days missed for asthma.

In all, the study’s results “underscore the value of providing decision support to families at home,” the investigators write. The study’s results, they say, “demonstrate the additional value of decision support systems that engage families as well as the clinical team and justify the continued development and evaluation of decision support systems to foster shared, as opposed to simply clinician-focused, decision-making.”

For more information, see the Pediatrics study or read PolicyLab’s description of the project.

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