Feb 09 2015

Researchers Developing Reliable Measures of Children’s Sleep Health

sleep healthHealthy sleep is essential for children’s happiness, attentiveness, and energy, yet estimates suggest that up to 30 percent of children are affected by sleep problems. While parents usually have no difficulty describing their poor sleepers’ crankiness and fussiness, physicians have not had a standard, reliable way to measure these patient reports of children’s sleep.

Patient reported outcome measures are ways of obtaining information about your health or your well-being from your own perspective, without any translation from a clinician or an interviewer. The National Institutes of Health offers assessment tools called the Patient Reported Outcomes Measurement Information System (PROMIS) to help physicians precisely measure what patients are able to do and how they feel by asking a set of questions that have undergone rigorous scientific testing.

The PROMIS Pediatric Profile has core measures covering domains such as anxiety, depression, fatigue, pain, physical function, and social participation, but the big missing piece of the portfolio is sleep health. Christopher B. Forrest, MD, PhD, a CHOP pediatrician and professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania, recently received a two-year grant from the Patient-Centered Outcomes Research Institute (PCORI) to develop PROMIS pediatric sleep health measures that will fill this gap and enable patients and their families to express exactly how health conditions and treatments affect their sleep.

“These questions address the dimensions of life that I like to call feelings, doings, and beings,” said Dr. Forrest, who has been involved with the PROMIS initiative since 2009. “It’s how you feel about yourself and your life, what you can do in life, and then your ‘beings’ is what you become — your personal growth and development. You cannot get that information unless you ask somebody, and what we’ve done through the National Institutes of Health PROMIS program is standardize the methodology.”

For example, “In the past seven days, I fell asleep during school,” is one of the PROMIS items being considered to measure wakefulness and sleep-related impairment. A section of questions on sleep practices includes, “In the past seven days, what time did you go to bed on school nights?”

Once the set of PROMIS pediatric sleep health measures are developed, the idea is for the questionnaires to be offered on tablets, computer kiosks, or paper forms in physicians’ waiting rooms. Two versions will be available for child self-report (ages 8 and up) and parent-proxy (children ages 5 and up).

At CHOP, efforts are underway to eventually incorporate answers to the sleep bank items and other patient-reported outcomes measures as part of the electronic health record. In addition to giving clinicians a standardized way to assess sleep quality and address pediatric sleep concerns as they change over time, the sleep health measures could be used as clinical trial endpoints.

“A medical treatment ought to make kids feel better, but they are not fully recovered until they are able to do things better, like go to school, interact with friends, have sleepovers,” Dr. Forrest said. “Those tend to be the kinds of concerns that families have, but often they don’t get brought up at conventional medical encounters.”

An innovative facet of how the pediatric sleep health item banks are being created is the project’s engagement model. Twenty individuals from five stakeholder groups — parents, youth, advocates, clinicians, and researchers — help to design and oversee the research. One leader from each group plus the project staff make operational decisions.

The team already has accomplished a substantial part of the groundwork. They have interviewed sleep experts, parents, and children, as well as conducted a literature search to identify pediatric sleep measures that were developed previously. Based on the information that they gathered, they generated a preliminary list of 180 pediatric sleep measures. Their next step is to test and validate the questions by surveying about 4,000 children and parents from across the country. They will be recruiting children from CHOP’s Sleep Center, and another group of children with autism being treated at CHOP have agreed to participate in the research.

Dr. Forrest expects the PROMIS pediatric sleep measures will be narrowed down to about 100 items that will be ready for the engagement team to disseminate within the next two years. The final set of measures will be posted on the PROMIS website for free access.

“In addition to publishing papers, we will want to make known across the country through advocacy groups, through scientific communities, and clinical societies that these measures are available,” Dr. Forrest said. “Our hope is that they get used by thousands of researchers and tens of thousands of clinicians and patients.”

Dr. Forrest also serves as the principal investigator of PEDSnet, which is part of the PCORnet  national patient-centered research network established by PCORI to reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.

Permanent link to this article: http://www.research.chop.edu/blog/researchers-developing-reliable-measures-childrens-sleep-health/

Feb 06 2015

Project Increases Flu Vaccination in Pediatric Patients With Cancer

vaccinationWhile influenza vaccination is important for all children, it is critical that pediatric patients with cancer get a flu shot because their weakened immune systems leave them especially vulnerable to severe infections. A quality improvement project at The Children’s Hospital of Philadelphia used simple strategies and cues for families and clinicians to ensure that these children did not leave outpatient clinics or inpatient units without any protection from the insidious virus.

Influenza hospitalizes and kills more people in the U.S. than any other vaccine-preventable disease. Because strains of influenza virus that circulate can differ from one season to the next, new influenza vaccine is available each September. The Centers for Disease Control and Prevention recommend that all children at least 6 months old should get the flu vaccine each year, as soon as it is available in their community. Healthy children can opt for a nasal spray version of the vaccine, but children who have cancer and are immunocompromised receive the flu shot, which does not contain live virus.

“Historically at CHOP, about 53 to 56 percent of patients with cancer were getting the flu vaccine,” said Jason L. Freedman, MD, MSCE, an attending physician in the Division of Oncology at CHOP. “Some parents fear: My child has cancer, why would I give them a vaccine on top of this? They may not realize that the ramifications of being unvaccinated are much worse. If you’re immunosuppressed and can’t fight the virus, it could be fatal.”

Dr. Freedman and colleagues decided to improve the Division of Oncology’s track record for flu vaccinations by implementing a multifaceted quality improvement initiative. Between September 2012 and March 2013, they focused on five overlapping interventions that took advantage of multiple opportunities during outpatient visits to identify patients who needed an annual flu shot and communicate the importance of early vaccination.

They started by boosting family education. Informational handouts and posters in physician waiting rooms encouraged patients to ask their physicians about flu vaccination. The next critical piece was working with the CHOP health informatics team to generate from the electronic health record a color-coded daily list of outpatients due for vaccination. As patients had their vital signs taken, the triage staff and nurses would ask, “Did you get the flu vaccine?” Patients who still needed flu shots received bright yellow colored wristbands as an alert to clinicians to order the vaccine. The study team provided education for clinicians during staff meetings on how to order the vaccine correctly and document any refusals or contraindications.

“On the inpatient side, we also saw discharge as an opportunity for vaccination,” Dr. Freedman said. “We built in an order for the flu vaccine into their admission order set. So when clinicians are admitting a child for chemo, there is already a prompt to order the flu vaccine for when they go home, which was a huge area of missed opportunity.”

The interventions were implemented in tandem, so while the research team is unable to pinpoint which interventions made the most difference, overall they increased the complete flu immunization rate by 20.1 percent to 64.5 percent. The proportion of patients receiving at least 1 dose of vaccination went up by 22.9 percent to 77.7 percent. In 2013, the oncology team continued to reinforce the process changes that they implemented during the study period, and they were able to sustain those rates, Dr. Freedman said.

“We augmented the opportunity for vaccination,” Dr. Freedman said. “The key to the success of this initiative is it was multifaceted and multidisciplinary. It has become part of our culture in clinic, and everyone has a sense of comradery about catching someone falling through the cracks.”

Other pediatric healthcare institutions could easily adapt this project to their settings with little expense or upkeep, Dr. Freedman pointed out. He also anticipates that similar approaches could be used within future quality improvement efforts to increase vigilance in other areas of pediatric cancer care, such as facilitating adherence to medication.

“This study shows that putting together new process changes, while it requires attention, education, and people who are invested, is feasible, doable, and affordable,” Dr. Freedman said.

The results of this study appeared online Jan. 12 in Pediatrics.

Permanent link to this article: http://www.research.chop.edu/blog/project-increases-flu-vaccination-pediatric-patients-cancer/

Feb 04 2015

CHOP Invited to President Obama’s Precision Medicine Announcement

precision medicineAt the invitation of the White House, last week The Children’s Hospital of Philadelphia sent two special guests to President Barack Obama’s announcement of the Precision Medicine Initiative: Steven M. Altschuler, MD, CHOP’s chief executive officer, and 9-year-old CHOP patient Emily Whitehead, who is cancer-free thanks to a personalized treatment called T cell therapy developed at CHOP.

The Precision Medicine Initiative, which President Obama first announced in his 2015 State of the Union speech, calls for new funding to build a national infrastructure to help sophisticated biomedical data flow from health clinics to DNA sequencing labs and back again as innovative treatments.

Precision medicine offers “one of the greatest opportunities for new medical breakthroughs that we have ever seen,” President Obama said.

The National Institutes of Health, Food and Drug Administration, and the Office of National Coordination for Health Information Technology will be involved in this program, which would allow researchers to custom-design more effective therapies based on a patient’s individual genetic profile.

“I am thrilled that President Obama recognizes the promise of our nation’s research efforts by making this investment. This announcement signifies his commitment to bringing this issue to the forefront of our national agenda,” said Dr. Altschuler.

Emily Whitehead, of Philipsburg, Pa., was diagnosed with acute lymphoblastic leukemia (ALL) at the age of four. After multiple relapses, she was out of standard treatment options. In 2012, she became the first child to enroll in the clinical trial for T cell therapy, which bioengineers a patient’s own immune cells to hunt down and eliminate cancer cells. The custom-designed cells then remain in a patient’s circulation to guard against the cancer’s resurgence. Today, Emily has been cancer-free for more than two years. She is active in school and loves playing with her dog, Lucy.

Emily has appeared prominently in many news stories since her doctors announced dramatic findings during a December 2012 scientific meeting. Shortly after the Precision Medicine Initiative was announced, Emily’s story was even highlighted in a White House blog post about Americans whose lives have been changed by precision medicine.

“If you didn’t know what happened to her, and you saw her now, you would have no idea what she has been through,” said Emily’s mother Kari Whitehead in the White House post.

And just last month, CHOP researchers and colleagues announced continuing promising results. In 39 children with ALL treated with T cell therapy in ongoing clinical trials, 36 had no evidence of cancer one month after treatment. The Food and Drug Administration has officially designated this approach as a Breakthrough Therapy, helping to expedite its progress into broader clinical trials.

“As a world leader in precision medicine, The Children’s Hospital of Philadelphia has made significant investment in its Center for Applied Genomics with the goal of diagnosing and curing pediatric disorders,” Dr. Altschuler noted. “We have already made strides harnessing this technology to better understand and treat cancer, autism, asthma, diabetes and many other childhood illnesses. Emily Whitehead’s personal story is a testament to the real impact this groundbreaking research can make in saving lives.”

To learn more about T Cell therapy at CHOP, see the Hospital’s website.

Permanent link to this article: http://www.research.chop.edu/blog/chop-invited-president-obamas-precision-medicine-announcement/

Feb 02 2015

Research Collaborative Aims to Advance Understanding of Preterm Birth

preterm birth

One in nine babies in the U.S. is born prematurely, according to the March of Dimes.

What causes preterm birth and how to prevent it remains a perplexing riddle in medical science. One in nine babies in the U.S. is born prematurely, according to the March of Dimes, and this rate has barely budged despite years of investigation.

Finding the solutions will require the ingenuity of researchers and physicians at The Children’s Hospital of Philadelphia who are part of a transdisciplinary team established by the new March of Dimes Prematurity Research Center at the Perelman School of Medicine at the University of Pennsylvania. They will apply sophisticated technology and methodology in molecular biology and genomics to help better understand the basis for preterm birth and eventually diminish the leading cause of newborn death in the U.S.

Babies born before 37 weeks are considered to be premature, and because their bodies and organ systems have not matured completely, they often need help breathing, eating, fighting infection, and staying warm. They can have long-term health problems, including cerebral palsy, cognitive impairments, and sensory disorders.

The March of Dimes announced in November that it will invest $10 million over the next five years to create the Prematurity Research Center, which is one of four launched by the foundation since 2011. The new center involves more than 40 investigators who will focus on three research themes that aim to generate important new discoveries regarding preterm birth: bioenergetics and genetics, cervical remodeling, and placental dysfunction.

“This kind of cooperation and collaboration is on a different scale than has ever been developed for preterm birth,” said Rebecca A. Simmons, MD, the project leader for the bioenergetics and genetics theme and an attending neonatologist at CHOP and the Hospital of the University of Pennsylvania. “It’s not only collaborative across our campus and many different departments within the Penn/CHOP system, but we also collaborate between centers, which is a very unique structure.”

The other transdisciplinary prematurity research centers include Stanford University School of Medicine in California; a partnership of Ohio research centers in Cincinnati, Columbus, and Cleveland; and Washington University in St. Louis.

At CHOP, the March of Dimes is particularly interested in researchers’ expertise in mitochondrial biology and biochemistry. Mitochondria are organelles often described as the body’s cellular power plants because they systematically extract energy from nutrient molecules (substrates) that is necessary to perform cells’ most basic and critical functions. Along with Marni Falk, MD, director of the Mitochondrial-Genetic Disease Clinic at CHOP, and Neal Sondheimer, MD, PhD, an attending physician at CHOP, Dr. Simmons will investigate how impaired cellular metabolism could result in power shortages in the reproductive tract that contribute to preterm labor.

“Reproductive tissues — the placenta, the uterus, the cervix — require a huge among of energy,” Dr. Simmons said. “But if for some reason the mitochondria aren’t able to utilize substrates normally, those reproductive tissues may not function properly.”

The study team will look at reproductive tissues from mice and humans with preterm birth to identify any patterns of mitochondrial dysfunction and then see if these disturbances interfere with the tissues’ ability to maintain bioenergetics and metabolic stability during pregnancy.

The Prematurity Research Center’s second theme ties into this hypothesis by exploring how the microbiome may influence cervical remodeling, which is a dynamic process during delivery that transforms the cervix from a rigid structure into a pliable passageway for a baby. The microbiome is a community of bacteria that normally inhabit the vagina and cervix. Preliminary studies suggest that the microbiome is different in women who experience preterm birth. The researchers will explore if abnormal bacteria cause mitochondrial distress and inflammation that accelerates cervical remodeling.

Michal Elovitz, MD, associate professor of Obstetrics and Gynecology and director of the Maternal and Child Health Research Program at the University of Pennsylvania, will lead the theme two projects. Samuel Parry, MD, associate professor of Obstetrics and Gynecology and chief of the Division of Maternal-Fetal Medicine at the University of Pennsylvania, is the project leader for theme three, which also will focus on mitochondrial deficiencies and an unhealthy microbiome as possible factors that disrupt metabolic processes in the placenta and lead to early labor.

“If we do find changes in the microbiome, those are targets for therapeutics that can be developed,” Dr. Simmons said. “We’ll look for strategies to either change the composition of the microbiome or change how the microbiome is functioning.”

Some of the answers to the medical mystery of preterm birth also may lie within complex gene-environment interactions that new research approaches could help to unravel. The study teams will explore the evolving field of epigenetics, which is the study of mechanisms that change how genes are expressed without altering the underlying DNA sequence.

They expect to gain insights into the multiple pregnancy-related risk factors — biological, behavioral, social, physical, and environmental — that could cause epigenetic modifications. For example, Dr. Simmons will explore in theme one how any abnormalities in the genes and biochemical pathways that regulate mitochondrial metabolic function could have a role in preterm birth.

“We think that if we can identify novel metabolic pathways, we can certainly design future interventions,” Dr. Simmons said.

As the Prematurity Research Center moves from the discovery phase to targeting and developing therapeutics, the researchers hope that their findings along the way will spark additional preterm birth studies. The Center will offer a series of pilot grants to investigators to encourage them to tackle this important health challenge. Dr. Simmons expects the first request for grant proposals to be issued in February.

Deborah A. Driscoll, MD, the Luigi Mastroianni Jr. Professor and Chair of the Department of Obstetrics and Gynecology at the Perelman School of Medicine at the University of Pennsylvania, is the director of the Prematurity Research Center, and Dr. Simmons, the Hallam Hurt Professor of Pediatrics, and Dr. Parry are the principal investigators.

Permanent link to this article: http://www.research.chop.edu/blog/research-collaborative-aims-advance-understanding-preterm-birth/

Jan 30 2015

Bridging the Gap Between Womb and World

preterm babiesIn 2012 more than 10 percent of births in the United States were preterm, and nearly 1 percent of births were critically preterm (younger than 26 weeks). These numbers point to a sobering truth: every year, hundreds of thousands of babies are born before they’re ready, requiring urgent medical care immediately after (and likely during) birth.

Coming into the world too early can lead to myriad health issues. Preterm babies, particularly those born before 28 weeks, face a host of challenges, including the fight just to survive.

And preterm babies don’t just face health challenges in the hours and days following their births — many are confronted with obstacles throughout their lives. Those infants who do survive may experience temperature fluctuations, respiratory issues, gastrointestinal and cardiovascular problems, and neurological problems like abnormal blood vessel development, or damage and scarring of blood vessels in the retina.

But investigators at The Children’s Hospital of Philadelphia are on the cusp of an innovative approach to caring for these most delicate infants, one that could radically transform the way they are treated and significantly improve their outcomes.

Alan W. Flake, MD, an attending surgeon, director of the Hospital’s Center for Fetal Diagnosis and Treatment, and Professor of Surgery, Obstetrics and Gynecology, Perelman School of Medicine at the University of Pennsylvania, has been leading a groundbreaking project on the development of an extracorporeal support of the premature infant (ESPI) system.

Far more than a standard incubator or isolette, the device Dr. Flake’s team has been developing is exactly what it sounds like: an external uterus designed to help preterm infants bridge the gap between their mother’s womb and the world.

“This is an enormously promising study,” said Dr. Flake. “Our system is designed, as much as possible, to avoid the deleterious effects of preterm birth.”

Read more about this exciting program in the Research Annual Report.

Permanent link to this article: http://www.research.chop.edu/blog/bridging-gap-womb-world/

Jan 28 2015

Lessons Learned From OB Unit Closures: Planning, Communication Needed

OB unitHospital staff of obstetric (OB) units are dedicated to ensuring that an infant’s birth is a moment of wonder and joy, but after a series of hospitals in Philadelphia began closing their maternity programs, the OB units that remained open were strained by surges in patient volume, low workforce morale, and lack of care continuity, according to a new study led by researchers at The Children’s Hospital of Philadelphia.

From 1997 to 2012, 13 out of 19 hospital maternity units shut down within the city. The researchers conducted semistructured interviews with 23 obstetric department chairs, leaders of private obstetric groups, obstetricians, nurses, nurse managers, and midwives at 11 hospitals that continued their maternity units. Based on their responses, the researchers learned that better transition planning is needed to help reduce stress on the health systems’ staff and avoid fragmented care for mothers and babies.

“While the degree of obstetric unit closures was larger in Philadelphia than in any other metropolitan area, analyzing the situation may provide useful lessons for other areas as hospital consolidations, closures, and mergers have accelerated since the enactment of the Affordable Care Act,” said study leader Scott A. Lorch, MD, MSCE, a neonatologist and researcher in the Center for Outcomes Research at CHOP.

Dramatic surges in delivery volume were the greatest challenge, according to study participants. Maternity units averaged a 58 percent increase in volume, resulting in frequent overcrowding, understaffing, and lower staff morale. Moreover, the overall patient mix shifted toward poorer patients who were more likely to receive late or no prenatal care.

Prior to the closures, patients often received prenatal care at the same hospital where they gave birth. As the maternity units shut down, the patients had to choose another birthing hospital. Their prenatal health information did not always follow them to the new hospital.

“One clear message from this study is that women need help from their healthcare system in obtaining better continuity of care throughout their pregnancies,” Lorch said.

Overall, the study participants identified two main areas for improvement: better communication among hospitals before closures occurred, and the development of regional solutions to exchange health information and coordinate prenatal care with care at delivery.

“Because hospitals compete with each other for patients, local health departments may need to exercise foresight and planning, identifying hospital units at risk for closing,” Lorch said. “Easing the transition when obstetric units close should improve the experience of both patients and caregivers.”

Lorch and colleagues published their research in the December 2014 issue of Health Affairs and spoke Dec. 8 at a forum sponsored by the journal at the National Press Club in Washington. Co-authors included Ashley Martin, MPH, and Richa Randa, MPH, both from the Center for Outcomes Research at CHOP; and Sindhu K. Srinivas, MD, MSCE, and David Grande, MD, both from Penn Medicine. The study was funded by the Agency for Healthcare Research and Quality, part of the National Institutes of Health.

Permanent link to this article: http://www.research.chop.edu/blog/lessons-learned-ob-unit-closures-planning-communication-needed/

Jan 26 2015

Jeffrey H. Silber, MD, PhD Contributes to Resident Hour, Colon Cancer Studies

Jeffrey H. Silber, MD, PhDThe Children’s Hospital of Philadelphia’s Jeffrey H. Silber, MD, PhD, contributed to two recent studies that span the research spectrum. The first, published in The Journal of the American Medical Association (JAMA), investigated changes to the number of hours medical residents can work. The second investigation, of which Dr. Silber was the lead author and which appeared in the Annals of Internal Medicine, was a study of racial disparities in colon cancer survival.

In the JAMA study, Dr. Silber and colleagues found resident duty hour reforms did not result in significantly higher 30-day readmission or mortality rates. And with the Annals of Internal Medicine investigation, the researchers showed racial disparities in colon cancer survival did not decrease over a 14-year period, from 1991 to 2005.

A pediatrician and healthcare economist, since 1997 Dr. Silber has directed CHOP’s Center for Outcomes Research. He has published extensively on the use of multivariate matching in healthcare, and has applied this approach to outcomes research in both pediatric and adult medicine and surgery, disparities research, and cancer research. Dr. Silber is a professor of Pediatrics, Anesthesiology and Critical Care at the University of Pennsylvania Perelman School of Medicine and professor of Health Care Management at The Wharton School.

With the JAMA study, the researchers sought to determine whether 2011 reforms to the number of hours residents could work had affected patient mortality and readmissions. Implemented by the Accreditation Council for Graduate Medical Education (ACGME), the reforms maintained the 2003 maximum of 80 hours a week but reduced residents’ work limit from 30 to 16 consecutive hours for first-year residents, and to 24 hours for more experienced residents.

The investigators performed an observational study of Medicare patient admissions data from July 1, 2009 to June 30, 2012, comprising some 2,790,356 patients with 6,384,273 admissions across 3104 hospitals, and examined a number of medical conditions (such as congestive heart failure and diabetes) and surgical categories. They found “no significant positive or negative associations of duty-hour reforms” with 30-day all-location mortality or 30-day all-cause readmissions.

“There has been a lot of speculation about the effect of the 2011 ACGME duty hour reforms on patient outcomes, so we looked at death and readmission rates at the national level,” said the study’s lead author, the University of Pennsylvania’s Mitesh S. Patel, MD, MBA, MS.

“Some hoped that by shortening intern shifts from 30 hours to 16 hours, less fatigued residents would lead to less medical errors and improved patient outcomes. Yet, others were concerned that shorter shifts would increase patient handoffs and leave less time for education, thereby negatively affecting patient outcomes,” said Dr. Patel. “These results show that in the first year of the reforms, neither was true.”

Presentation to Blame for Colon Cancer Survival Disparities

 The Annals of Internal Medicine study, meanwhile, examined racial disparities in colon cancer survival rates.

Dr. Silber has previously investigated racial disparities in cancer survival. In August of 2013 he published a study in JAMA that showed differences in how breast cancer patients present at diagnosis are more responsible for racial disparities in 5-year survival than treatment disparities.

In the current study, Dr. Silber and colleagues — including the Wharton School of the University of Pennsylvania’s Paul R. Rosenbaum, PhD; and Penn Medicine’s Bruce J. Giantonio, MD — examined Survey, Epidemiology, and End Results (SEER) Medicare data from 1991 to 2005 across 16 sites to determine the extent to which colon cancer disparities result from presentation at diagnosis or treatment.

One of the most common forms of cancer, colon and rectal cancer account for approximately 10 percent of new cancer cases each year worldwide. According to the National Cancer Institute (NCI), five-year survival rates for colon and rectal cancer vary widely depending on how early it is detected. Based on data from 2004 to 2010, 89.8 percent of patients with localized cancer survived five years after being diagnosed, while only 12.9 percent of patients with distant or metastasized cancer survived five years. And during 2014 the NCI estimates 2014 there will be approximately 50,000 deaths from colon and rectal cancer.

Using SEER data, Dr. Silber and colleagues matched 7,677 black patients aged 65 and older with three groups of 7,677 white patients aged 65 and older — who were followed until 2009 — to investigate the roles of demographics, presentation, and treatment in survival. Finding a “persistent disparity,” the researchers’ data showed a 9.9 percent difference in five-year survival between black and white patients when matched for demographics. When matched for presentation the disparity was 4.9 percent, and when matched for treatment it was 4.3 percent.

“In conclusion, more of the racial disparity in colon cancer survival is explained by differences in health at diagnosis (both the state of the cancer and comorbid conditions) than by differences in subsequent treatment,” the authors write. “Our study suggests that the most effective route to reducing the racial survival disparity is to find ways to reduce the disparity in presentation, so fewer black patients present with advanced disease.”

To read more about the JAMA study, see Penn Medicine’s press release. And for more information about the Annals of Internal Medicine paper, see the journal.

Permanent link to this article: http://www.research.chop.edu/blog/chop-expert-contributes-resident-hour-colon-cancer-studies/

Jan 23 2015

Beyond the Bandages, Nurses Treat Trauma


Pediatric nurses play a key role in preventing injury-related post-traumatic stress by providing trauma-informed care.

It’s no surprise that nurses know trauma. With roughly 2.7 million nurses working in the U.S., versus about 900,000 physicians (according to the American Association of Colleges of Nursing and The Henry J. Kaiser Family Foundation, respectively), nurses are on the front line of clinical care. Nurses are very often the first clinical staff patients meet, and do everything from performing triage and physical exams to conducting research.

Indeed, a recent study from CHOP and Penn State Hershey Children’s Hospital published in the Journal of Pediatric Nursing confirms that pediatric trauma nurses are knowledgeable about practicing trauma-informed care, but points to the need for additional nurse training to help families cope after a child’s injury.

When an injury occurs, both the child and family members may experience traumatic stress reactions interfering with a full recovery. Pediatric nurses play a key role in preventing injury-related post-traumatic stress by providing trauma-informed care, which includes recognizing pre-existing trauma, addressing stress associated with the traumatic event, minimizing potentially traumatic aspects of treatment, and identifying children who need additional monitoring or referrals for more help.

Researchers surveyed nurses across five trauma centers about their knowledge, opinions, and current practices in addressing psychological recovery in their injured patients. More than 90 percent of the nurses surveyed recognize the importance of attending to psychosocial needs as part of trauma nursing care, and 75 to 80 percent report that they encourage parents to turn to family and friends for support and help parents manage a child’s pain and anxiety during procedures. However, fewer nurses surveyed reported directly assessing a child or parent’s distress or providing specific instruction in how to cope with difficult or painful experiences.

“When a child is hospitalized for an injury, nurses play a key role not only in medical care, but also in helping families cope and fully recover emotionally,” said Nancy Kassam-Adams, PhD, director of CHOP’s Center for Pediatric Traumatic Stress. “Taken together with other recent studies that found only one in five trauma centers routinely screen child and youth for traumatic stress responses, these results help to identify gaps in current practice and point to possible policy and training needs.”

The results of this survey suggest that efforts to improve trauma-informed pediatric nursing care should highlight specific skills related to helping patients and their parents manage emotional responses to difficult medical experiences.

In a blog post about the study published on the Center for Research and Injury’s blog, CHOP nurse Christie Alminde, RN, CPN notes nurses’ skills and experiences are “well suited to provide excellent trauma-informed care.”

“When we incorporate an understanding of traumatic stress into our routine interactions with children and families, we can provide trauma-informed nursing care that not only reduces the impact of difficult or frightening medical events for our pediatric patients, but also helps with their emotional reactions to illness and injury,” writes Alminde.

For more information and resources about medical traumatic stress, see the Center for Pediatric Trauma Stress. And to learn more about this study, see the full press release.

Permanent link to this article: http://www.research.chop.edu/blog/beyond-bandages-nurses-treat-trauma/

Jan 21 2015

$50 Million Gift to Fund Research Transformation at CHOP

Raymond G. Perelman.

CHOP will establish the Raymond G. Perelman Campus, an eight-acre area that will serve as a hub of pediatric research and clinical innovation at CHOP.

The Children’s Hospital of Philadelphia (CHOP) today announced a $50 million gift from Raymond G. Perelman. This gift, equal to the largest ever received by CHOP, will directly support a wide range of pediatric research, tackling the toughest and most challenging pediatric illnesses and establishing CHOP as a global center for innovative pediatric study.

In recognition of this extraordinary gift for research, CHOP will establish the Raymond G. Perelman Campus, an eight-acre area that will serve as a hub of pediatric research and clinical innovation at CHOP.

“The significant research funding associated with this gift underscores the commitment of Raymond Perelman to world-class pediatric research and medicine,” said Mortimer J. Buckley, chair, Board of Trustees at The Children’s Hospital of Philadelphia. “Through his generosity, Mr. Perelman is first and foremost improving the lives of children for generations to come and we will always be grateful for his altruism,” he said.

Raymond G. PerelmanBorn in Philadelphia, Raymond G. Perelman was raised in the Feltonville and Olney sections of the city and attended the University of Pennsylvania. After serving in WWII, he began a 50-year career with American Paper Products Co., and is currently CEO of RGP Holdings. Mr. Perelman has served on many Boards of Directors, and has been active in numerous civic organizations, including the Philadelphia Museum of Art, Penn Medicine, and the Albert Einstein Health Center.

“We know first-hand the tremendous resource that CHOP represents to families in the Philadelphia region, across the country and around the world,” said Raymond G. Perelman. “This gift will help to ensure that critically important pediatric research, conducted on this campus, remains second to none; in addition to making a tangible difference in the lives of children around the globe for many years to come, it is my hope and expectation that advances in medical research funded by this gift will benefit us all,” he said.

The gift also establishes the “Raymond G. Perelman Research Fund,” that will provide direct support for:

  • Raymond G. Perelman Center for Cellular & Molecular Therapeutics, designed to re-engineer the body’s immune system to fight, and defeat, cancer, metabolic diseases and other catastrophic illnesses through the efforts of the world’s leading experts in immunotherapy and molecular therapy.
  • Perelman Scholars, two new tenure-track faculty positions at CHOP to be filled by candidates from among the world’s finest pediatric researchers.
  • Perelman Fund for Research Innovation, a permanent source of reliable funding for the CHOP Research Institute to strategically identify and support new pilot research initiatives.
  • Perelman Endowed Chair in Pediatric Ophthalmology to support a highly skilled researcher and physician-scientist seeking to break new ground and forge novel paths critical to understanding and treating ophthalmologic diseases in children.
  • Research Support for general research activities of the CHOP Research Institute.

The newly named Raymond G. Perelman Campus comprises an eight-acre portion of the CHOP site located on Civic Center Boulevard just south of the main hospital and encompasses its most state-of-the-art research and clinical centers, including the Ruth and Tristram Colket, Jr. Translational Research Building, which opened in 2009; the new Buerger Center for Advanced Pediatric Care, under construction and slated to open this summer; and a 2.6-acre landscaped plaza.

To learn more about this extraordinary gift, see the full press release.

Permanent link to this article: http://www.research.chop.edu/blog/50-million-gift-fund-research-transformation-chop/

Jan 20 2015

Office Visits May Be Too Short to Detect Autism Risk

autismIdentifying autism spectrum disorder (ASD) risk early is imperative, because the earlier autism is detected the earlier clinicians will be able to intervene. In general, the younger the patient, the more effective ASD interventions are. However, according to a new study published in Pediatrics, short observations — such as an office visit — may be insufficient when it comes to assessing autism risk.

Led by the Center for Autism Research’s Judith S. Miller PhD, MS, the researchers studied a group of children aged 15 to 33 months with autism, speech delays, and typical development. The researchers asked licensed psychologists with autism expertise — who were unaware of the study participants’ status — to analyze two 10-minute video samples of the participants’ autism evaluations. The experts measured five behaviors, including responding, initiating, vocalizing, play, and response to name.

The article’s first author was Terisa Gabrielsen, PhD, NCSP, of Brigham Young University (BYU). Before moving to BYU, Dr. Gabrielsen completed training at CHOP, where she and Dr. Miller conducted research that informed the current study. That work, also published in Pediatrics, examined the feasibility of a formal autism screening process.

In the current study, the researchers found the experts missed referrals for 39 percent of the children in the autism group. Detecting autism risk based on the brief observations alone was challenging because the children who had autism showed more typical behavior (89 percent of the time) than atypical behavior (11 percent) during that short window.

“It’s not often the pediatrician’s fault that referrals are missed,” Dr. Gabrielsen said. “Even autism experts missed a high percentage of referrals within that short timeframe. Decisions for referral need to be based on more information, including autism screening and information from parents.”

In March of 2014, the Centers for Disease Control and Prevention announced that one in 68 children in the U.S. has an ASD — a 29 percent increase over the 2012 rate. The seemingly growing prevalence of ASD demonstrates the need for accurate autism referral decisions. This decision-making process should include parent observations, developmental testing, a detailed history, and autism screening tools in addition to clinical judgment, the research team concluded.

“Certainly, some young children with autism are clearly impaired and easy to recognize,” noted Dr. Miller in a press release put out by BYU. “However, this study looked at the entire range of children who present to the pediatrician’s office, and we found that many children’s impairments are not immediately obvious. For these children, formalized screening instruments and more time with a specialist may be critical.”

For more information about autism and autism research, see the Center for Autism Research. A description of diagnostic tests and other information on how parents can spot the developmental delays associated with ASD is available in the diagnosis section of Autism Roadmap. The Roadmap provides directories of service providers, community resources, government programs, ideas for various stages of childhood and beyond, and explanations of the latest research on ASD treatments and interventions.

Permanent link to this article: http://www.research.chop.edu/blog/office-visits-may-short-detect-autism-risk/

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