Tessie October

Effectively expressing empathy to improve ICU care

Tessie October

“Families who feel we’re really listening and care about what they have to say are more likely to feel comfortable as they put their child’s life in our hands a second, third or fourth time,” says Tessie W. October, M.D., M.P.H.

In nearly every intensive care unit (ICU) at every pediatric hospital across the country, physicians hold numerous care conferences with patients’ family members daily. Due to the challenging nature of many these conversations – covering anything from unexpected changes to care plans for critically ill children to whether it’s time to consider withdrawing life support – these talks tend to be highly emotional.

That’s why physician empathy is especially important, says Tessie W. October, M.D., M.P.H., critical care specialist at Children’s National Health System.

Several studies have shown that when families believe that physicians hear, understand or share patients’ or their family’s emotions, patients can achieve better outcomes, Dr. October explains. When families feel like their physicians are truly empathetic, she adds, they’re more likely to share information that’s crucial to providing the best care.

“For the most part, our families do not make one-time visits. They return multiple times because their children are chronically ill,” Dr. October says. “Families who feel we’re really listening and care about what they have to say are more likely to feel comfortable as they put their child’s life in our hands a second, third or fourth time. They’re also less likely to regret decisions made in the hospital, which makes them less likely to experience long-term psychosocial outcomes like depression and anxiety.”

What’s the best way for physicians to show empathy? Dr. October and a multi-institutional research team set out to answer this question in a study published online in JAMA Network Open on July 6, 2018.

With families’ consent, the researchers recorded 68 care conferences that took place at Children’s pediatric ICU (PICU) between Jan. 3, 2013, to Jan. 5, 2017. These conversations were led by 30 physicians specializing in critical care, hematology/oncology and other areas and included 179 family members, including parents.

During these conferences, the most common decision discussed was tracheostomy placement – a surgical procedure that makes an opening in the neck to support breathing – followed by the family’s goals, other surgical procedures or medical treatment. Twenty-two percent of patients whose care was discussed during these conferences died during their hospitalization, highlighting the gravity of many of these talks.

Dr. October and colleagues analyzed each conversation, counting how often the physicians noticed opportunities for empathy and how they made empathetic statements. The researchers were particularly interested in whether empathetic statements were “buried,” which means they were:

  • Followed immediately by medical jargon
  • Followed by a statement beginning with the word “but” that included more factual information or
  • Followed by a second physician interrupting with more medical data.

That compares with “unburied” empathy, which was followed only by a pause that provided the family an opportunity to respond. The research team examined what happened after each type of empathetic comment.

The researchers found that physicians recognized families’ emotional cues 74 percent of the time and made 364 empathetic statements. About 39 percent of these statements were buried. In most of these instances, says Dr. October, the study’s lead author, the buried empathy either stopped the conversation or led to family members responding with a lack of emotion themselves.

After the nearly 62 percent of empathetic statements that were unburied, families tended to answer in ways that revealed their hopes and dreams for the patient, expressed gratitude, agreed with care advice or expressed mourning—information that deepened the conversation and often offered critical information for making shared decisions about a patient’s care.

Physicians missed about 26 percent of opportunities for empathy. This and striving to make more unburied empathetic statements are areas ripe for improvement, Dr. October says.

That’s why she and colleagues are leading efforts to help physicians learn to communicate better at Children’s National. To express empathy more effectively, Dr. October recommends:

  • Slow down and be in the moment. Pay close attention to what patients are saying so you don’t miss their emotional cues and opportunities for empathy.
  • Remember the “NURSE” mnemonic. Empathetic statements should Name the emotion, show Understanding, show Respect, give Support or Explore emotions.
  • Avoid using the word “but” as a transition. When you follow an empathetic statement with “but,” Dr. October says, it cancels out what you said earlier.
  • Don’t be afraid to invite strong emotions. Although it seems counterintuitive, Dr. October says helping patients express strong feelings can help process emotions that are important for decision-making.

In addition to Dr. October, study co-authors include Zoelle B. Dizon, BA, Children’s National; Robert M. Arnold, M.D., University of Pittsburgh Medical Center; and Senior Author, Abby R. Rosenberg, M.D., MS, University of Washington School of Medicine.

Research covered in this story was supported by the National Institutes of Health under grants 5K12HD047349-08 and 1K23HD080902 and the National Center for Advancing Translational Sciences under Clinical and Translational Science Institute at Children’s National Health System grant number UL1TR0001876.

Tory Peitz and Victoria Catalano

Making weight: Ensuring that micro preemies gain pounds and inches

Tory Peitz and Victoria Catalano

Tory Peitz, R.N., (left) and Victoria Catalano, RDN, LD, CNSC, CLC, (right) Pediatric Dietitian Specialist in the Neonatal Intensive Care Unit at Children’s National Health System, measure the length of a micro preemie who weighed 1.5 pounds at birth.

A quality-improvement project to standardize feeding practices for micro preemies – preterm infants born months before their due date –  helped to boost their weight and nearly quadrupled the frequency of lactation consultations ordered in the neonatal intensive care unit (NICU), a multidisciplinary team from Children’s National Health System finds.

According to the Centers for Disease Control and Prevention, about 1 in 10 infants in 2016 was preterm, born prior to completing 37 gestational weeks of pregnancy. Micro preemies are the tiniest infants in that group, weighing less than 1,500 grams and born well before their brain, lungs and organs like the liver are fully developed.

As staff reviewed charts for very low birth weight preterm infants admitted to Children’s NICU, they found dramatic variation in nutritional practices among clinicians and a mean decline in delta weight Z-scores, a more sensitive way to monitor infants’ weight gain along growth percentiles for their gestational age. A multidisciplinary team that included dietitians, nurses, neonatologists, a lactation consultant and a quality-improvement leader evaluated nutrition practices and determined key drivers for improving nutrition status.

“We tested a variety of strategies, including standardizing feeding practices; maximizing intended delivery of feeds; tracking adequacy of calorie, protein and micronutrient intake; and maximizing use of the mother’s own breast milk,” says Michelande Ridoré, MS, a Children’s NICU quality-improvement lead who will present the group’s findings during the Virginia Neonatal Nutrition Association conference this fall. “We took nothing for granted: We reeducated everyone in the NICU about the importance of the standardized feeding protocol. We shared information about whether infants were attaining growth targets during daily rounds. And we used an infographic to help nursing moms increase the available supply of breastmilk,” Ridoré says.

On top of other challenges, very low birth weight preterm infants are born very lean, with minimal muscle. During the third trimester, pregnant women pass on a host of essential nutrients and proteins to help satisfy the needs of the fetus’ developing muscles, bones and brain. “Because preterm infants miss out on that period in utero, we add fortification to provide preemies with extra protein, phosphorus, calcium and zinc they otherwise would have received from mom in the womb,” says Victoria Catalano, RDN, LD, CNSC, CLC, a pediatric clinical dietitian in Children’s NICU and study co-author. Babies’ linear growth is closely related to neurocognitive development, Catalano says. A dedicated R.N.  is assigned to length boards for Children’s highest-risk newborns to ensure consistency in measurements.

Infants who were admitted within the first seven days of life and weighed less than 1,500 grams were included in the study. At the beginning of the quality-improvement project, the infants’ mean delta Z-score for weight was -1.8. By December 2018, that had improved to -1.3. And the number of lactation consultation ordered weekly increased from 1.1 to four.

“We saw marked improvement in micro preemies’ nutritional status as we reduced the degree of variation in nutrition practices,” says Mary Revenis, M.D., NICU medical lead on nutrition and senior author for the research. “Our goal was to increase mean delta Z-scores even more. To that end, we will continue to test other key drivers for improved weight gain, including zinc supplementation, updating infants’ growth trajectories in the electronic medical record and advocating for expanded use of birth mothers’ breast milk,” Dr. Revenis says.

In addition to Ridoré, Catalano and Dr. Revenis, study co-authors include Caitlin Forsythe MS, BSN, RNC-NIC, lead author; Rebecca Vander Veer RD, LD, CNSC, CLC, pediatric dietitian specialist; Erin Fauer RDN, LD, CNSC, CLC, pediatric dietitian specialist; Judith Campbell, RN, IBCLC, NICU lactation consultant; Eresha Bluth MHA; Anna Penn M.D., Ph.D., neonatalogist; and Lamia Soghier M.D., Med., NICU medical unit director.

Pregnant-Mom

Safeguarding fetal brain health in pregnancies complicated by CHD

Pregnant-Mom

During the last few weeks of pregnancy, certain regions of the fetal brain experience exponential growth but also are more vulnerable to injury during that high-growth period.

Yao Wu, Ph.D., a research postdoctoral fellow in the Developing Brain Research Laboratory at Children’s National Health System, has received a Thrasher Research Fund early career award to expand knowledge about regions of the fetal brain that are vulnerable to injury from congenital heart disease (CHD) during pregnancy.

CHD, the most common birth defect, can have lasting effects, including overall health issues; difficulty achieving milestones such as crawling, walking or running; and missed days at daycare or school, according to the Centers for Disease Control and Prevention. Brain injury is a major complication for infants born with CHD. Catherine Limperopoulos, Ph.D., director of Children’s brain imaging lab, was the first to provide in vivo evidence that fetal brain growth and metabolism in the third trimester of pregnancy is impaired within the womb.

“It remains unclear which specific regions of the fetal brain are more vulnerable to these insults in utero,” Limperopoulos says. “We first need to identify early brain abnormalities attributed to CHD and understand their impact on infants’ later behavioral and cognitive development in order to better counsel parents and effectively intervene during the prenatal period to safeguard brain health.”

During the last few weeks of pregnancy, certain regions of the fetal brain experience exponential growth but also are more vulnerable to injury during that high-growth period. The grant, $26,749 over two years, will underwrite “Brain Development in Fetuses With Congenital Heart Disease,” research that enables Wu to utilize quantitative, non-invasive magnetic resonance imaging (MRI) to compare fetal brain development in pregnancies complicated by CHD with brain development in healthy fetuses of the same gestational age.Wu will leverage quantitative, in vivo 3-D volumetric MRI to compare overall fetal and neonatal brain growth as well as growth in key regions including cortical grey matter, white matter, deep grey matter, lateral ventricles, external cerebrospinal fluid, cerebellum, brain stem, amygdala and the hippocampus.

The research is an offshoot of a prospective study funded by the National Institutes of Health that uses advanced imaging techniques to record brain growth in 50 fetuses in pregnancies complicated by CHD who need open heart surgery and 50 healthy fetuses. MRI studies are conducted during the second trimester (24 to 28 weeks gestational age), third trimester (33 to 37 weeks gestational age) and shortly after birth but before surgery. In addition, fetal and neonatal MRI measurements will be correlated with validated scales that measure infants’ and toddlers’ overall development, behavior and social/emotional maturity.

“I am humbled to be selected for this prestigious award,” Wu says. “The findings from our ongoing work could be instrumental in identifying strategies for clinicians and care teams managing high-risk pregnancies to optimize fetal brain development and infants’ overall quality of life.”

Lenore Jarvis

Screening for postpartum depression in the emergency department

Lenore Jarvis

“Some of these women had no idea how common postpartum depression was,” says Lenore Jarvis, M.D., M.Ed. “They thought they were crazy and felt alone and were bad moms.”

It’s a scenario that Children’s emergency medicine specialist Lenore Jarvis, M.D., M.Ed., has seen countless times: A mother brings her infant to the emergency department (ED) in the middle of the night with a chief complaint of the baby being fussy. Nothing she does can stop the incessant crying, she tells the triage nurse. When doctors examine the baby, they don’t see anything wrong. Often, this finding is reassuring. But, despite their best efforts to comfort her, the mother isn’t reassured and leaves the hospital feeling anxious and overwhelmed.

After these encounters, Dr. Jarvis wondered: Might the mother be the actual patient?

Postpartum depression (PPD) is the most common complication of childbirth, Dr. Jarvis explains, occurring in up to 20 percent of all mothers, and may be higher (up to 50 percent) in low-income and immigrant women. Far beyond simple “baby blues,” the mood disorder can have significant implications for the mother, her baby and the entire family. It can hinder mother-child bonding and lead to early discontinuation of breastfeeding, delayed immunizations, and child abuse and neglect. The associated effects on early brain development might cause cognitive and developmental delays for the infant and, later in life, can manifest as emotional and behavioral problems. PPD can disrupt relationships between parents. And suicide is the top cause of postpartum death.

Mothers are supposed to be screened routinely for PPD at postpartum visits with their maternal or pediatric health care providers. In addition, several medical professional societies – including the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists – now recommend screening for PPD in the prenatal and postnatal periods and during routine well-child visits in the outpatient setting. But these screenings often don’t happen, Dr. Jarvis says, either because doctors aren’t following the recommendations or parents aren’t attending these visits due to barriers to health care access or other problems.

One way to sidestep these challenges, she says, is to provide PPD screening in the emergency setting.

“The ED becomes the safety net for people who are not routinely accessing regular checkups for themselves and their children,” Dr. Jarvis says. “If a mother is having an acute crisis in the middle of the night and feeling anxious and depressed, they often come to the emergency department for help.”

Dr. Jarvis and colleagues launched a pilot study in the Children’s ED to screen for PPD. For eight months beginning June 2015, the researchers invited English- and Spanish-speaking mothers who arrived at the ED with infants 6 months old or younger with complaints that didn’t necessitate immediate emergency care to take a short questionnaire on a computer tablet. This questionnaire included the Edinburgh Postnatal Depression Scale, a well-validated tool to screen for PPD, along with basic sociodemographic questions and queries about risk factors that other studies previously identified for PPD.

Just over half agreed to participate. When Dr. Jarvis and colleagues analyzed the results from these 209 mothers, they found that 27 percent scored positive for PPD, more than the average from previous estimates. Fourteen of those mothers reported having suicidal thoughts. Surprisingly, nearly half of participants reported that they’d never been screened previously for PPD, despite standing recommendations for routine screenings at mother and baby care visits, the research team writes in findings published online May 5, 2018, in Pediatric Emergency Care.

Based on the screening results, the researchers implemented a range of interventions. All mothers who participated in the study received an informational booklet from the March of Dimes on PPD. If mothers scored positive, they also received a local PPD resource handout and were offered a consultation with a social worker. Those with a strongly positive score were required to receive a social worker consultation and were given the option of “warm-line” support to PPD community partners, a facilitated connection to providers who offer individual or group therapy or home visits, or to a psychiatrist who might prescribe medication. Mothers with suicidal thoughts were assessed by a physician and assisted by crisis intervention services, if needed.

When the researchers followed up with mothers who screened positive one month later, an overwhelming majority said that screening in the ED was important and that the resources they were given had been key for finding help. Many commented that even the screening process seemed like a helpful intervention.

“Some of these women had no idea how common PPD was. They thought they were crazy and felt alone and were bad moms,” Dr. Jarvis says. “For someone to even ask about PPD made these women aware that this exists, and it’s something people care about.”

Many thanked her and colleagues for the follow-up call, she adds, saying that it felt good to be cared for and checked on weeks later. “It goes to show that putting support systems in place for these new mothers is very important,” she says.

Dr. Jarvis and ED colleagues are currently collaborating with social workers, neonatology and other Children’s National Health System care partners to start screening mothers in the neonatal intensive care unit (NICU) and ED for PPD. They plan to compare results generated by this universal screening to those in their study. These findings will help researchers better understand the prevalence of PPD in mothers with higher triage acuity levels and how general rates of PPD for mothers in the ED and NICU compare with those generated in past studies based on well-child checks. Eventually, she says, they would like to study whether the interventions they prescribed affected the known consequences of PPD, such as breastfeeding,  timely immunization rates and behavior outcomes.

“With appropriate care and resources,” Dr. Jarvis adds, “we’re hoping to improve the lives of these women and their families.”

In addition to Dr. Jarvis, the lead study author, Children’s co-authors include Kristen A. Breslin, M.D., M.P.H.; Gia M. Badolato, M.P.H.; James M. Chamberlain, M.D.; and Monika K. Goyal, M.D., MSCE, the study’s senior author.

Making the grade: Children’s National is nation’s Top 5 children’s hospital

Children’s National rose in rankings to become the nation’s Top 5 children’s hospital according to the 2018-19 Best Children’s Hospitals Honor Roll released June 26, 2018, by U.S. News & World Report. Additionally, for the second straight year, Children’s Neonatology division led by Billie Lou Short, M.D., ranked No. 1 among 50 neonatal intensive care units ranked across the nation.

Children’s National also ranked in the Top 10 in six additional services:

For the eighth year running, Children’s National ranked in all 10 specialty services, which underscores its unwavering commitment to excellence, continuous quality improvement and unmatched pediatric expertise throughout the organization.

“It’s a distinct honor for Children’s physicians, nurses and employees to be recognized as the nation’s Top 5 pediatric hospital. Children’s National provides the nation’s best care for kids and our dedicated physicians, neonatologists, surgeons, neuroscientists and other specialists, nurses and other clinical support teams are the reason why,” says Kurt Newman, M.D., Children’s President and CEO. “All of the Children’s staff is committed to ensuring that our kids and families enjoy the very best health outcomes today and for the rest of their lives.”

The excellence of Children’s care is made possible by our research insights and clinical innovations. In addition to being named to the U.S. News Honor Roll, a distinction awarded to just 10 children’s centers around the nation, Children’s National is a two-time Magnet® designated hospital for excellence in nursing and is a Leapfrog Group Top Hospital. Children’s ranks seventh among pediatric hospitals in funding from the National Institutes of Health, with a combined $40 million in direct and indirect funding, and transfers the latest research insights from the bench to patients’ bedsides.

“The 10 pediatric centers on this year’s Best Children’s Hospitals Honor Roll deliver exceptional care across a range of specialties and deserve to be highlighted,” says Ben Harder, chief of health analysis at U.S. News. “Day after day, these hospitals provide state-of-the-art medical expertise to children with complex conditions. Their U.S. News’ rankings reflect their commitment to providing high-quality care.”

The 12th annual rankings recognize the top 50 pediatric facilities across the U.S. in 10 pediatric specialties: cancer, cardiology and heart surgery, diabetes and endocrinology, gastroenterology and gastrointestinal surgery, neonatology, nephrology, neurology and neurosurgery, orthopedics, pulmonology and urology. Hospitals received points for being ranked in a specialty, and higher-ranking hospitals receive more points. The Best Children’s Hospitals Honor Roll recognizes the 10 hospitals that received the most points overall.

This year’s rankings will be published in the U.S. News & World Report’s “Best Hospitals 2019” guidebook, available for purchase in late September.

distressed woman holding baby

When depression lingers after the NICU

distressed woman holding baby

Roughly half a million babies end up in the neonatal intensive care unit (NICU) each year in the U.S., often sending their parents on a wild emotional rollercoaster. Like other new parents, many parents feel symptoms of depression when their child leaves the NICU. For the majority, these depressive symptoms lift over time. But for others, depression can persist, affecting their well-being and relationships, including those with their new babies.

Thus far, it’s been unclear which parents are at a higher risk for this lasting depression. However, a new study led by Children’s researchers and presented at the Pediatric Academic Societies 2018 annual meeting suggests that parents whose depression lingers six months after their child’s NICU discharge tend to share certain demographic characteristics: They’re younger, have less education and care for more than one child.

“Using a validated screening tool, we found that 40 percent of parents in our analyses were positive for depression at the time their newborn was discharged from the NICU,” says Karen Fratantoni, M.D., M.P.H., a Children’s pediatrician and the lead study author. “It’s reassuring that, for many parents, these depressive symptoms ease over time. However for a select group of parents, depression symptoms persisted six months after discharge. Our findings help to ensure that we target mental health screening and services to these more vulnerable parents,” Dr. Fratantoni adds.

The study is an offshoot from “Giving Parents Support (GPS) after NICU discharge,” a large, randomized clinical trial exploring whether providing peer-to-peer parental support after NICU discharge improves babies’ overall health as well as their parents’ mental health.

Mothers of preterm and full-term infants who are hospitalized in NICUs are at risk for peripartum mood disorders, including postpartum depression. The Children’s research team sought to determine how many parents of NICU graduates experience depression and which characteristics are shared by parents with elevated depression scores.

They included 125 parents who had enrolled in the GPS clinical trial in their exploratory analyses and assessed depressive symptoms using a 10-item, validated screening tool, the Center for Epidemiological Studies Depression Scale (CES-D). Eighty-four percent of the parents were women. Nearly 61 percent of their infants were male and were born at a median gestational age of 37.7 weeks and mean birth weight of 2,565 grams. The median length of time these newborns remained in the NICU was 18 days.

When the newborns were discharged, 50 parents (40 percent) had elevated CES-D scores. By six months after discharge, that number dropped to 17 parents (14 percent).Their mean age ranged from 26.5 to 30.6 years old.

“Parents of NICU graduates who are young, have less education and are caring for other children are at higher risk for persistent symptoms of depression,” says Dr. Fratantoni. “We know that peripartum mood disorders can persist for one year or more after childbirth so these findings will help us to better match mental health care services to parents who are most in need.”

An American College of Obstetricians and Gynecologists’ committee opinion issued May 2018 calls for all women to have contact with a maternal care provider within the first three weeks postpartum and to undergo a comprehensive postpartum visit no later than 12 weeks after birth that includes screening for postpartum depression and anxiety using a validated instrument.

Study co-authors include Lisa Tuchman, M.D., chief, Children’s Adolescent and Young Adult Medicine Division; Randi Streisand, Ph.D., Children’s interim chief of Psychology and Behavioral Health; Nicole S. Herrera; Katherine Kritikos and Lamia Soghier, M.D., Children’s neonatologist.

Preemie Baby

Brain food for preemies

Preemie Baby

Babies born prematurely – before 37 weeks of pregnancy – often have a lot of catching up to do. Not just in size. Preterm infants typically lag behind their term peers in a variety of areas as they grow up, including motor development, behavior and school performance.

New research suggests one way to combat this problem. The study, led by Children’s researchers and presented during the Pediatric Academic Societies 2018 annual meeting, suggests that the volume of carbohydrates, proteins, lipids and calories consumed by very vulnerable premature infants significantly contributes to increased brain volume and white matter development, even though additional research is needed to determine specific nutritional approaches that best support these infants’ developing brains.

During the final weeks of pregnancy, the fetal brain undergoes an unprecedented growth spurt, dramatically increasing in volume as well as structural complexity as the fetus approaches full term.

One in 10 infants born in the U.S. in 2016 was born before 37 weeks of gestation, according to the Centers for Disease Control and Prevention. Within this group, very low birthweight preemies are at significant risk for growth failure and neurocognitive impairment. Nutritional support in the neonatal intensive care unit (NICU) helps to encourage optimal brain development among preterm infants. However, their brain growth rates still lag behind those seen in full-term newborns.

“Few studies have investigated the impact of early macronutrient and caloric intake on microstructural brain development in vulnerable preterm infants,” says Katherine Ottolini, lead author of the Children’s-led study. “Advanced quantitative magnetic resonance imaging (MRI) techniques may help to fill that data gap in order to better direct targeted interventions to newborns who are most in need.”

The research team at Children’s National Health System enrolled 69 infants who were born younger than 32 gestational weeks and weighed less than 1,500 grams. The infants’ mean birth weight was 970 grams and their mean gestational age at birth was 27.6 weeks.

The newborns underwent MRI at their term-equivalent age, 40 weeks gestation. Parametric maps were generated for fractional anisotropy in regions of the cerebrum and cerebellum for diffusion tensor imaging analyses, which measures brain connectivity and white matter tract integrity. The research team also tracked nutritional data: Grams per kilogram of carbohydrates, proteins, lipids and overall caloric intake.

“We found a significantly negative association between fractional anisotropy and cumulative macronutrient/caloric intake,” says Catherine Limperopoulos, Ph.D., director of Children’s Developing Brain Research Laboratory and senior author of the research. “Curiously, we also find significantly negative association between macronutrient/caloric intake and regional brain volume in the cortical and deep gray matter, cerebellum and brainstem.”

Because the nutritional support does contribute to cerebral volumes and white matter microstructural development in very vulnerable newborns, Limperopoulos says the significant negative associations seen in this study may reflect the longer period of time these infants relied on nutritional support in the NICU.

In addition to Ottolini and Limperopoulos, study co-authors include Nickie Andescavage, M.D., Attending, Children’s Neonatal-Perinatal Medicine; and Kushal Kapse.

Joseph Scafidi

Developing brains are impacted, but can recover, from molecularly targeted cancer drugs

Joseph Scafidi

“The plasticity of the developing brain does make it susceptible to treatments that alter its pathways,” says Joseph Scafidi, D. O., M.S. “Thankfully, that same plasticity means we have an opportunity to mitigate the damage from necessary and lifesaving treatments by providing the right support after the treatment is over.”

One of the latest developments in oncology treatments is the advancement of molecularly targeted therapeutic agents. These drugs can be used to specifically target and impact the signaling pathways that encourage tumor growth, and are also becoming a common go to for ophthalmologists to treat retinopathy of prematurity in neonates.

But in the developing brain of a child or adolescent, these pathways are also crucial to the growth and development of the brain and central nervous system.

“These drugs have been tested in vitro, or in tumor cells, or even in adult studies for efficacy, but there was no data on what happens when these pathways are inhibited during periods when their activation is also playing a key role in the development of cognitive and behavioral skills, as is the case in a growing child,” says Joseph Scafidi, D. O., M.S., a neuroscientist and pediatric neurologist who specializes in neonatology at Children’s National Health System.

As it turns out, when the drugs successfully inhibit tumor growth by suppressing receptors, they can also significantly impact the function of immature brains, specifically changing cognitive and behavioral functions that are associated with white matter and hippocampal development.

The results appeared in Cancer Research, and are the first to demonstrate the vulnerability of the developing brain when this class of drugs is administered. The pre-clinical study looked at the unique impacts of drugs including gefitinib (Iressa), sunitib malate (Sutent) and rapamycin (Sirolimus) that target specific pathways responsible for the rapid growth and development that occurs throughout childhood.

The agents alter signaling pathways in the developing brain, including decreasing the number of oligodendrocytes, which alters white matter growth. Additionally, the agents also impact the function of specific cells within the hippocampus related to learning and memory. When younger preclinical subjects were treated, impacts of exposure were more significant. Tests on the youngest pre-clinical subjects showed significantly diminished capacity to complete cognitive and behavioral tasks and somewhat older, e.g. adolescent, subjects showed somewhat fewer deficits. Adult subjects saw little or no deficit.

“The impacts on cognitive and behavioral function for the developing brain, though significant, are still less detrimental than the widespread impacts of chemotherapy on that young brain,” Dr. Scafidi notes. “Pediatric oncologists, neuro-oncologists and ophthalmologists should be aware of the potential impacts of using these molecularly targeted drugs in children, but should still consider them as a treatment option when necessary.”

The effects are reversible

Researchers also found measurable improvements in these impaired cognitive and behavioral functions when rehabilitation strategies such as environmental stimulation, cognitive therapy and physical activity were applied after drug exposure.

“The plasticity of the developing brain does make it susceptible to treatments that alter its pathways,” says Dr. Scafidi. “Thankfully, that same plasticity means we have an opportunity to mitigate the damage from necessary and lifesaving treatments by providing the right support after the treatment is over.”

Many major pediatric oncology centers, including the Center for Cancer and Blood Disorders at Children’s National, already incorporate rehabilitation strategies such as cognitive therapy and increased physical activity to help pediatric patients return to normal life following treatment. The results from this study suggest that these activities after treatment for pediatric brain tumors may play a vital role in improving recovery of brain cognitive and behavioral function in the pediatric population.

This research was funded by grants to Dr. Scafidi from the National Brain Tumor Society, Childhood Brain Tumor Foundation and the National Institutes of Health.

Maureen Monaghan

Using text messages and telemedicine to improve diabetes self-management

Maureen Monaghan

Maureen Monaghan, Ph.D., C.D.E., clinical psychologist and certified diabetes educator in the Childhood and Adolescent Diabetes Program at Children’s National Health System, awarded nearly $1.6 million grant from American Diabetes Association.

Adolescents and young adults ages 17-22 with Type 1 diabetes are at high risk for negative health outcomes. If fact, some studies show that less than 20 percent of patients in this population meet targets for glycemic control, and visits to the Emergency Department for acute complications like diabetic ketoacidosis peak around the same age.

The American Diabetes Association (ADA) awarded Maureen Monaghan, Ph.D., C.D.E., clinical psychologist and certified diabetes educator in the Childhood and Adolescent Diabetes Program at Children’s National Health System, nearly $1.6 million to evaluate an innovative behavioral intervention to improve patient-provider communication, teach and help patients maintain self-care and self-advocacy skills and ultimately prepare young adults for transition into adult diabetes care, limiting the negative adverse outcomes that are commonly seen in adulthood.

Dr. Monaghan is the first psychologist funded through the ADA’s Pathway to Stop Diabetes program, which awards six annual research grants designed to spur breakthroughs in fundamental diabetes science, technology, diabetes care and potential cures. Dr. Monaghan received the Accelerator Award, given to diabetes researchers early in their careers, which will assist her in leading a behavioral science project titled, “Improving Health Communication During the Transition from Pediatric to Adult Diabetes Care.”

“Behavior is such a key component in diabetes care, and it’s wonderful that the American Diabetes Association is invested in promoting healthy behaviors,” says Dr. Monaghan. “I’m excited to address psychosocial complications of diabetes and take a closer look at how supporting positive health behavior during adolescence and young adulthood can lead to a reduction in medical complications down the road.”

During the five year study, Dr. Monaghan will recruit patients ages 17-22 and follow their care at Children’s National through their first visit with an adult endocrinologist. Her team will assess participants’ ability to communicate with providers, including their willingness to disclose diabetes-related concerns, share potentially risky behaviors like drinking alcohol and take proactive steps to monitor and regularly review glucose data.

“The period of transition from pediatric to adult diabetes care represents a particularly risky time. Patients are going through major life changes, such as starting new jobs, attending college, moving out of their parents’ homes and ultimately managing care more independently,” says Dr. Monaghan. “Behavioral intervention can be effective at any age, but we are hopeful that we can substantially help youth during this time of transition when they are losing many of their safety nets.”

Study leaders will help participants download glucose device management tools onto their smartphones and explain how to upload information from patients’ diabetes devices into the system. Participants will then learn how to review the data and quickly spot issues for intervention or follow-up with their health care provider.

Patients also will participate in behavioral telemedicine visits from the convenience of their own homes, and receive text messages giving them reminders about self-care and educational information, such as “Going out with your friends tonight? Make sure you check your glucose level before you drive.”

At the study’s conclusion, Dr. Monaghan anticipates seeing improvements in psychosocial indicators, mood and transition readiness, as well as improved diabetes self-management and engagement in adult medicine.

Lee Beers

Mental health screenings increase in practices with hands-on support

Lee Beers

A new study suggests many more pediatricians would make mental health screenings an integral part of a child’s annual checkup if they received training and support through a proven and powerful method used to improve health care processes and outcomes.

Results of the multidisciplinary study led by Children’s National Health System and published in Pediatrics, showed screening rates improved from one percent to 74 percent during the 15-month study. A total of 10 pediatric practices and 107 individual providers in the Washington, D.C., area voluntarily participated in the study.

“This study is an important first step towards early identification of children with mental health concerns,” says Lee S. Beers, M.D., the study’s lead author. “If you identify and treat children with mental health concerns earlier, you’re going to see better outcomes.”

In this country, approximately 13 percent of youth live with a serious mental illness, but only about 20 percent of them get the help they need, according to the D.C. Collaborative for Mental Health in Pediatric Primary Care. 

While many pediatricians agree that early mental health screenings are important, the researchers found that few providers were actually conducting them. In the past, primary care providers have cited a shortage of pediatric mental health providers, a lack of time, insufficient resources and lower reimbursements.

To address the lack of mental health screenings, researchers decided to test whether the Quality Improvement (QI) Learning Collaborative model, which was pioneered in the mid-1990s to scale and improve health care services, would help study participants integrate screenings into their practices.

The QI Learning Collaborative model takes a more hands-on approach than the typical “once and done” study, says Beers. Specifically, the participating primary care providers received periodic check-ins, ongoing support, monitoring and technical assistance. “We use rapid cycles of evaluation to see what’s working and what’s not working, and we keep going,” Beers says.

Dr. Beers is optimistic about how well the practices performed, adding the caveat that more information is needed about the burden it could place on already bustling pediatric practices. In addition, she says, “future research will be needed to determine whether identifying mental health issues also leads to improved access to care and outcomes for pediatric patients.”

Dr. Beers serves as medical director for Municipal and Regional Affairs at the Child Health Advocacy Institute (CHAI), part of Children’s National. CHAI is a founding member of the D.C. Healthy Communities Collaborative (DCHCC), which partnered on the study with the Georgetown University Medical Center and the Georgetown University Center for Child and Human Development.

Adolescent brain scan from obesity study

Imaging captures obesity’s impact on the adolescent brain

Adolescent brain scan from obesity study

For the first time, a team of researchers led by Chandan Vaidya, Ph.D., chair of the Department of Psychology at Georgetown University, has used functional magnetic resonance imaging (fMRI) to capture the brain function of a small population of adolescents with obesity, both before and after bariatric surgery.

Obesity affects the whole body, from more obvious physical impacts on bones and joints to more subtle, internal impacts on organs like the brain.

For the first time, a team of researchers has used functional magnetic resonance imaging (fMRI) to capture the brain function of a small population of adolescents with obesity, both before and after bariatric surgery. The goal is to better understand the neural changes that occur when an adolescent is obese, and determine the effectiveness of interventions, such as vertical sleeve gastrectomy, at improving brain function as weight is lost.

The study, published as the November Editors’ Choice in the journal Obesity, found that executive and reward-related brain functions of study participants with obesity improved following the surgical procedure and initial weight loss.

How bariatric surgery changes the teenage brain from Research Square on Vimeo.

“We’ve known for some time that severe obesity has negative consequences on some neurocognitive function areas for adults,” says Chandan Vaidya, Ph.D., chair of the Department of Psychology at Georgetown University and a senior author of the study. “But for the first time, we’ve captured fMRI evidence in young patients, and also shown that surgical intervention and the resulting weight loss can reverse some of those deficits.”

“For me, this early evidence makes a strong case that when kids are struggling with severe obesity, we need to consider surgical intervention as an option sooner in the process,” notes Evan Nadler, M.D., director of the Bariatric Surgery Program at Children’s National Health System, who also contributed to the study. “The question that remains is whether the neurocognitive function improves more if surgery, and thus weight loss, happens earlier – and is there a time factor that should help us determine when to perform a procedure that will maximize improvements?”

The preliminary study included 36 participants and was conducted using patients recruited from the Children’s National Bariatric Surgery program, one of the first children’s hospitals to achieve national accreditation by the Metabolic and Bariatric Surgery Accreditation and Quality Improvement Program.

“We asked these questions because we know that in the kids we see, their behavioral, brain, and physical health are all very closely related to one another and have an impact on each other,” adds Eleanor Mackey, Ph.D., study senior author and co-principal investigator on the National Institute of Diabetes and Digestive and Kidney Diseases grant that funded the project. “We expected that as physical health improves, we might see corresponding improvements in brain and behavior such as cognitive and school performance.”

The study also pointed out some technical and practical challenges to studying this particular young population. Anyone with a BMI greater than 50 was not able to fit within the MR bore used in the study, preventing fMRI participation by those patients.

“In addition to future studies with a larger sample size, we’d like to see if there are neuroimaging markers of plasticity differences in a population with BMI greater than 50,” says Dr. Vaidya. “Does the severity of the obesity change how quickly the brain can adapt following surgery and weight loss?”

The abstract was selected by the journal’s editors as one that provides insights into preventing and treating obesity. It was featured at the Obesity Journal Symposium during Obesity Week 2017 in Washington, D.C., as part of the Obesity Week recognition, and a digital video abstract was also released about the findings.

Olanrewaju-Falusi

Improving health care for immigrant children

Olanrewaju-Falusi

Immigrant children may face multiple and complex challenges that underlie seemingly routine health concerns that bring them to clinic, says Olanrewaju Falusi, M.D., F.A.A.P.

Over the next 40 years, children of immigrant families will grow to represent one-third of residents of the United States. To help more pediatricians address the interplay between immigration and child health, a Children’s National Health System clinician helped to compile a set of case studies, resources and recommendations.

Olanrewaju Falusi, M.D., F.A.A.P., and a colleague explained these issues during their joint presentation, “Advancing health care quality for immigrant children,” during the 2017 American Academy of Pediatrics (AAP) national conference. The aim of the presentation and of their work is to help pediatricians understand the impact of immigration-related issues and unresolved immigration status on children’s mental health and well-being.

“As pediatricians, we are tasked with caring for the whole child. And, for immigrant children, there may be multiple and complex challenges that underlie seemingly routine health concerns that bring them to clinic,” says Dr. Falusi, associate medical director of municipal and regional affairs at the Child Health Advocacy Institute at Children’s National. “By more fully understanding immigrant children’s unique needs, we can help bolster their resiliency.”

Though refugees may be resettled anywhere, in fiscal year 2016 almost 7,400 unaccompanied children were released to sponsors in California, the highest of the states. In five states (California, Illinois, Massachusetts, New York, Washington state and the District of Columbia) immigration status has no bearing on a child accessing public health. Undocumented immigrants, however, are not eligible for subsidies that lower the price of health insurance. Nor can they access such federal entitlements as SNAP (formerly known as Food Stamps). Even something as basic as having a ride to a doctor’s appointment can be complicated since only one dozen states offer access to driver’s licenses regardless of immigration status.

Using the case of a child named “Pedro,” who feared deportation, Dr. Falusi and a colleague explained how immigration status impacts access to clinical care, discussed DACA, his parent’s undocumented status and explored how clinicians could support Pedro and his family.

In another scenario, Esperanza comes to clinic with her 3- and 6-year-old sons, who are afraid to leave her side. Since the family fled Honduras and settled in the United States, Esperanza worries about her older daughter’s behavioral problems in school.

“These are challenging mental health concerns to unravel because some families may be reluctant to reopen past traumas,” Dr. Falusi says. “During their flight from their home country, children can be victims of or witnesses to violence, including rape. They may have seen another person drown during a water crossing or die in arid deserts.”

Clinicians can begin such conversations simply by trying to understand why Esperanza and her children came to the United States in order to consider the range of options for appropriate clinical care, as well as possible legal services. Bridging from that more neutral starting point, the health care team could delve into her family’s experiences in Honduras. If Esperanza fears returning to Honduras, asylum may be an option if her fears are well-founded and the persecution is due to race, religion, nationality, political opinion or membership in a particular social group, Dr. Falusi says.  Additional options may include T visas and U visas for victims of certain crimes.

“We are all aware how little time there is during the clinical encounter to have such detailed conversations. Ideally, the clinician would serve as a trusted intermediary, helping the family connect with community resources in order to best address the unique social needs of immigrant children,” Dr. Falusi says.

Latina mother playing with her baby boy son on bed

Helping parents of babies leaving NICU cope

Latina mother playing with her baby boy son on bed

A study team from Children’s National tried to determine factors closely associated with poor emotional function in order to identify at-risk parents most in need of mental health support.

Nearly half of parents reported depressive symptoms, anxiety and stress when their infants were discharged from the neonatal intensive care unit (NICU), and parents who were the most anxious were the most depressed. A Children’s National Health System team presented these research findings during the 2017 American Academy of Pediatrics (AAP) national conference.

Because their infants’ lives hang in the balance, NICU parents are at particular risk for poor emotional function, including mood disorders, anxiety and distress. Children’s National Neonatologist Lamia Soghier, M.D., and the study team tried to determine factors closely associated with poor emotional function in order to identify at-risk parents most in need of mental health support.

The study team enrolled 300 parents and infants in a randomized controlled clinical trial that explored the impact of providing peer-to-peer support to parents after their newborns are discharged from the NICU. The researchers relied on a 10-item tool to assess depressive symptoms and a 46-question tool to describe the degree of parental stress. They used regression and partial correlation to characterize the relationship between depressive symptoms, stress, gender and educational status with such factors as the infant’s gestational age at birth, birth weight and length of stay.

Some 58 percent of the infants in the study were male; 58 percent weighed less than 2,500 grams at birth; and the average length of stay for 54 percent of infants was less than two weeks. Eighty-nine percent of parents who completed the surveys were mothers; 44 percent were African American; and 45 percent reported having attained at least a college degree. Forty-three percent were first-time parents.

About 45 percent of NICU parents had elevated Center for Epidemiological Studies Depression Scale (CES-D) scores.

“The baby’s gender, gestational age at birth and length of NICU stay were associated with the parents having more pronounced depressive symptoms,” Dr. Soghier says. “Paradoxically, parents whose newborns were close to full-term at delivery had 6.6-fold increased odds of having elevated CES-D scores compared with parents of preemies born prior to 28 weeks’ gestation. Stress levels were higher in mothers compared with fathers, but older parents had lower levels of stress than younger parents.”

Dr. Soghier says the results presented at AAP are an interim analysis. The longer-term PCORI-funded study continues and explores the impact of providing peer support for parents after NICU discharge.

Kid being bullied

Reducing bullying the Finnish way – in the United States

Kid being bullied

Bullying is a pervasive problem for U.S. kids. Recent studies show that between one in four to one in three children have been bullied at school. About one in 10 are victimized regularly.

Research suggests that this isn’t just harmless “kids being kids” behavior, says Marissa Smith, Ph.D., a postdoctoral fellow in behavioral pain medicine at Children’s National Health System. Bullied children have a greater risk of experiencing overall negative academic outcomes, such as greater school avoidance, decreased classroom engagement and lower academic achievement than children who aren’t bullied. They also suffer emotionally, with more depression, anxiety and withdrawal, as well as suffering physically, reporting more headaches, stomachaches and sleep difficulties.

In response to these harmful consequences, researchers in Finland in 2009 developed the KiVa Anti-Bullying Program. This school-based program combats bullying through a series of teacher-led lessons provided to students throughout the academic year that aim to shift the entire school’s ethos.

Research in Finland demonstrating the success of KiVa has encouraged school systems around the world to pilot and evaluate the KiVa program in their schools. However, Smith cautions, differing school cultures could lead to differing results.

“Compared with Finland, teachers in the United States juggle many more competing demands on their time and, at times, have fewer resources and less institutional support in fulfilling those demands,” she explains. “Consequently, it’s not clear whether a program like KiVa would be as realistic here.”

To see how implementing KiVa might differ in an American setting, Smith and colleagues helped fourth- and fifth-grade teachers at nine elementary schools in one Delaware school district roll out the program to 1,409 students during the 2013 to 2014 school year. Each teacher completed a three-hour training course at the beginning of the year – already a drastic cut from the two full days of training that is standard in Finland – due to competing demands on American teachers’ professional development time.

Delaware teachers also completed questionnaires at the start of the year about variables that might affect how well they would be able to implement the program, such as their level of professional burnout, perceived principal support, self-efficacy at teaching and perceived feasibility and efficacy of KiVa. Students completed questionnaires at the beginning and end of the academic year that measured levels of victimization and bullying.

Once a month, teachers were to give their classes standard KiVa lessons. To track what they actually completed, teachers answered online questionnaires. They also met with a graduate student once monthly to learn tips about implementing the program.

Results published online Aug. 29, 2017 in Journal of School Psychology by Smith and co-authors showed that this program accomplished its goals of significantly reducing bullying and victimization by the end of the year. Precisely how successful these measures were hinged on what instructional “dose” of the program students received, Smith says. On average, teachers provided only half of the activities that were intended to be included in each lesson. They also gave an average of 7.8 KiVa lessons out of a possible total of 10.

When Smith and colleagues assessed which teacher variables correlated with a reduction in KiVa instruction, professional burnout had the highest impact. It’s hard to say what leads teachers to experience burnout; however, Smith explains, it might be an overall symptom of U.S. teaching culture.

“Teachers are highly regarded in Finland – at the same level as doctors – but U.S. teachers are not afforded nearly the same levels of respect,” she says. “Burnout here may speak to this lack of respect. Other factors that contributed to diminished KiVa instruction include lower levels of resources and institutional support, teachers’ own degree of emotional investment in the school and teachers’ perception they actually can accomplish the things they set out to do.”

Each of these differences, Smith adds, could contribute to KiVa not being as effective in the United States as it is in Finland.

One way to improve the success of this program in the United States, the study notes, might be to distill KiVa’s tenets to the bare minimum necessary to maintain positive outcomes, allowing more efficient lessons. Additionally, outsourcing lessons to guidance counselors or other school staff versed in social and emotional topics might ease teachers’ workloads.

“Schools in the United States differ significantly from those in Finland, where this program started,” she says. “Our results suggest that supporting U.S. teachers in ways that reduce burnout could lead to better implementation and less bullying – which could lead to real and lasting improvements to their students’ lives.”

Exchanging ideas

Exchanging ideas, best practices in China

Exchanging ideas

Physicians from the Children’s National delegation attended the Shanghai Pediatric Innovation Forum in June 2017. Pictured (left to right): Roberta DeBiasi, M.D., Michael Mintz, M.D., Robert Keating, M.D., Lawrence Jung, M.D., Peter Kim, M.D., and Sarah Birch, D.N.P., A.P.R.N.

In late June, a delegation of international pediatric experts from Children’s National Health System journeyed across the world to learn about the practice of pediatric medicine in China and to exchange ideas with colleagues there. Leaders from several of Children’s key specialties joined the delegation, including:

The group, led by Drs. Keating and Gaillard, traveled to China with Children’s Outreach Coordinator John Walsh, whose longtime connections and close familiarity with the pediatric medical community in Hangzhou and Shanghai made the collaboration possible. The team toured several of the largest children’s hospitals in country, including The Children’s Hospital of Zhejiang University School of Medicine in Hangzhou and Shanghai Children’s Medical Center, connecting with pediatric specialists there.

“Some of the most important parts of this trip were the opportunities to exchange ideas and solidify long term relationships that will allow us to work closely with our peers in China as they develop their pediatric programs. The potential is tremendous for unique collaborations between our teams and theirs for research and the development of clinical care improvements for children,” said Roger Packer, M.D., senior vice president of the Center for Neuroscience and Behavioral Health, who joined the delegation in Beijing.

A keynote lecture and more at the 3rd China International Forum on Pediatric Development

The delegation also was honored with an invitation to participate in the 3rd China International Forum on Pediatric Development. The forum is one of the largest pediatric focused meetings in the country and is led by all the major children’s hospitals in China, including those in Beijing and Shanghai. Close to 4,000 pediatricians attended the meeting, and presenters included esteemed international leaders in pediatric medicine from around the world.

Dr. Packer delivered one of the opening keynote lectures, entitled, “Translation of molecular advances into care: the challenge ahead for children’s hospitals.” His talk focused on the tremendous promise and significant challenges posed by the latest scientific advances, through the lens of a neurologist.

“Across the world, we are looking at the same challenges: How can we use scientific advances to find better outcomes? How can we financially support the new types of interventions made possible by these molecular biologics insights when they can cost millions of dollars for one patient?”

“There’s palpable excitement that these new developments will give us potential therapies we never dreamed about before, ways to reverse what we initially thought was irreversible brain damage, ways to prevent severe illnesses including brain tumors, but the issue is how to turn this promise into reality. That’s a worldwide issue, not simply a single country’s issue,” he continued.

He also flagged mental health and behavioral health as a crucial, universal challenge in need of addressing on both sides of the Pacific.

The Children’s National delegation, including Drs. DeBiasi, Song, Keating, Gaillard and Packer were also honored to share their insight in a series of specialty-specific breakout sessions at the Forum.

Overall, the long journey opened a dialogue between Children’s National and pediatric care providers in China, paving the way for future discussion about how to learn from each other and collaborate to enhance all institutions involved.

ECIN Briefing

Building resilient kids through healthy adults

ECIN Briefing

Mr. Lane, Dr. Hodgkinson, Dr. Biel, and Dr. Beers provided a briefing at the Washington, D.C., City Council in July about the Early Childhood Innovation Network, which takes evidence-based national models for early childhood mental health interventions and adds components designed to address Washington, D.C.’s unique needs.

Exposures to adverse childhood experiences are the single biggest predictor of outcomes for physical health, mental health, social functioning and academic achievement in children and into adulthood. There is evidence that negative experiences – such as poverty, housing insecurity, having a parent with untreated mental illness or actively engaged in substance abuse – have biological impacts on a child’s brain size and function.

Conversely, during the critical first few years of life, safe, stable and nurturing relationships from adult caregivers build healthy brains, even in the midst of adversity. Additionally, the ability of a child’s brain to absorb experience and to change means that early intervention to reduce exposure to or impact of these negative events can be particularly effective for young children. In a briefing for the Washington, D.C., City Council, leaders from the Early Childhood Innovation Network (ECIN) shared these facts and outlined how ECIN’s local collaborative of health, education and social service providers promotes resilient families and children through interventions designed to work best for each family.

“We are taking evidence-based practices from other places, and then personalizing them to our communities in D.C.,” says Lee Beers, M.D., co-director of the ECIN and the medical director for Municipal and Regional Affairs within the Child Health Advocacy Institute at Children’s National Health System. “We spent a lot of time seeking input and advice from primary care doctors, social services providers and community leaders, to make sure that we bring programs to clinics like the Children’s Health Center at Anacostia that are useful, sustainable and measurable for the children and families who live there.”

The network’s other co-director, Matthew G. Biel, M.D., chief of the Division of Child and Adolescent Psychiatry at MedStar Georgetown University Hospital continues, “We know that the best way to help these kids is by addressing challenges across generations – we can’t reach children without first helping the adults. In addition to evaluating for risk factors, we also need to screen for protective factors – how families can best buffer these young children from the toxic effects of adverse childhood experiences. Then, in a non-confrontational setting such as a routine primary care visit, we can provide them with additional tools to enhance those protective factors.”

A working example: HealthySteps D.C.

Drs. Beers and Biel cited the implementation of the HealthySteps program, an evidence-based intervention with a national network of over 100 pediatric and family practice sites across 15 states, locally in D.C. as one example of ECIN’s approach. The program, now underway at the Children’s Health Center at Anacostia and recently launched at the Children’s Health Center at THEARC, embeds specially trained HealthySteps specialists into the primary care team to provide parents and professionals with skills and tools that nurture healthy development in young children.

Nationwide, HealthySteps has been shown to have a significant impact on children, families and practices at relatively low cost, providing services within the primary care setting such as:

  • Early identification and access to effective interventions for development delays
  • Coaching on age-appropriate parent-child interactions and child social-emotional development
  • Support for parental depression, domestic violence, substance abuse, food, housing and other social determinants
  • Creating better integration between pediatric primary care and early childhood systems

ECIN’s D.C.-based version takes this successful national model and adds additional D.C. needs-based specific activities:

  • Each family is assigned a Family Champion who identifies and addresses specific resource needs, including mental health services, parent training, or support groups and basic needs such as insurance, housing or employment
  • HealthySteps specialists offer brief interventions within the primary care setting to address pressing needs such as maternal depression, grief and loss and child behavior management
  • HealthySteps specialists deliver specialized training to providers on child behavioral and developmental health

“Even in the short time since we implemented HealthySteps, we’re seeing significant impact around care coordination and case management for the families at our Children’s Health Center at Anacostia,” says Stacy Hodgkinson, Ph.D., a licensed clinical psychologist at Children’s National who serves as a HealthySteps specialist at the Children’s Health Center at Anacostia.

HealthySteps D.C. is the first of several initiatives under development by the Early Childhood Innovation Network. The group is also working together with additional community partners such as Educare, Martha’s Table, LIFT, and MedStar Washington Hospital Center to explore, implement and evaluate the effectiveness of programs in areas such as building social-emotional skills in young children, financial literacy and mental health support for mothers-to-be.

Community connections and coordination

“So many children with needs do not get connected to services, and the Early Childhood Innovation Network addresses this challenge. Even better, there has been a genuineness from ECIN to engaging community and earning buy-in for programs from the very beginning. They’ve made community leaders and parents an integral part of the network’s program design and implementation,” adds Ambrose Lane, Jr., chair and founder of the Health Alliance Network and chairman at the D.C. Department of Health Chronic Disease Citywide Collaborative.

Little girl eating

Daily tasks harder for girls with ASD

Little girl eating

Researchers found that girls with autism struggle with day-to-day functioning and independence skills more than boys.

Researchers at the Center for Autism Spectrum Disorders at Children’s National found something surprising in their recent study of executive function and adaptive skills. Girls, who often score well on direct assessments of communication skills, struggle more than boys with crucial tasks such as making a plan, getting organized and following through, as well as basic daily tasks like getting up and getting dressed, or making small talk.

“When parents were asked to rate a child’s day-to-day functioning, it turns out that girls were struggling more with these independence skills. This was surprising because in general, girls with ASD have better social and communication skills during direct assessments. The natural assumption would be that those communication and social skills would assist them to function more effectively in the world, but we found that this isn’t always the case,” says Allison Ratto, Ph.D., a psychologist in the Center for Autism Spectrum Disorders and one of the study’s authors. “Our goal was to look at real world skills, not just the diagnostic behaviors we use clinically to diagnose ASD, to understand how people are actually doing in their day to day lives.”

Conducted by a team within the Center for Autism Spectrum Disorders, the National Institute of Mental Health and The George Washington University, the study is the largest to date examining executive function and adaptive skills in women and girls with autism spectrum disorders (ASD).

The study collected parent-reported data from several rating scales of executive function and adaptive behavior, including the Behavior Rating Inventory of Executive Function, Parent Form (BRIEF) and the Vineland Adaptive Behavior Scales-II (VABS-II). The group included 79 females and 158 males meeting clinical criteria for autism spectrum disorders, ranging in ages from 7 to 18 years old. The groups were matched for intelligence, age and level of autism and ADHD symptoms.

Little is known about autism in females

The findings are part of a growing body of research focused on how ASD may affect females differently than males. The ratio of girls to boys with autism is approximately one to three. As a result of the larger numbers of males, existing data is predominantly focused on traits and challenges in that population. This is especially true in clinical trials, where enrollment is overwhelmingly male.

“Our understanding of autism is overwhelmingly based on males, similar to the situation faced by the medical community once confronted with heart disease research being predominantly male,” notes Lauren Kenworthy, Ph.D., director of the Center for Autism Spectrum Disorders and the study’s senior author. “We know how to identify signs, symptoms and treatments for autism in males, but we know very little about unique aspects of it in females.”

The historical lack of specific discovery around how autism presents in females may contribute to misdiagnosis or delay, and prevent implementation of necessary interventions. Such delays can have a major impact on outcomes, as recent research has demonstrated the critical importance of early diagnosis and intervention in ASD.

“Our focus in caring for children with autism is equipping all of them with strategies and skills to allow them to function and succeed in day-to-day living,” Dr. Kenworthy continues. “This study highlights that some common assumptions about the severity of challenges faced by girls with ASD may be wrong, and we may need to spend more time building the adaptive and executive function skills of these females if we want to help them thrive.”

“Enhancing our understanding of how biological differences change the presentation of autism in the long term is crucial to giving every person with ASD the tools they need to succeed in life,” she concludes.

Pamela Hinds

Giving children a voice in clinical trials

Pamela Hinds

“When experimental cancer drugs are studied, researchers collect details about how these promising therapies affect children’s organs, but rarely do they ask the children themselves about symptoms they feel or the side effects they experience,” says Pamela S. Hinds, Ph.D., R.N.

Children as young as 8 years old with incurable cancer can reliably characterize the impact an experimental therapy has on their symptoms and quality of life – even at the earliest stages of drug development – making self-reported patient outcomes a potential new clinical trial endpoint, according to a longitudinal validity study led by Children’s National Health System researchers.

Cancer is the No. 1 disease-related cause of death in U.S. children aged 1 to 19, and roughly 25 percent of the 12,400 children newly diagnosed with cancer will die of their disease, the study authors write.

“When experimental cancer drugs are studied, researchers collect details about how these promising therapies affect children’s organs, but rarely do they ask the children themselves about symptoms they feel or the side effects they experience,” says Pamela S. Hinds, Ph.D., R.N., director of Nursing Research and Quality Outcomes at Children’s National and lead author of study published June 5, 2017 in the journal Cancer. “Without this crucial information, the full impact of the experimental treatment on the pediatric patient is likely underreported and clinicians are hobbled in their ability to effectively manage side effects.”

To demonstrate the feasibility of children self-reporting outcomes, Hinds and colleagues recruited children and adolescents aged 8 to 18 with incurable or refractory cancers who were enrolled in Phase 1 safety trials or Phase 2 efficacy trials at four cancer settings: Children’s National, Seattle Children’s Hospital, Children’s Hospital of Philadelphia and Boston Children’s Hospital. Using a validated instrument to measure symptoms, function and other aspects of quality of life reported by patients, as well as four open-ended interview questions, researchers were able to better understand what aspects of symptoms and quality of life were most important to patients at this point in their lives and cancer treatment.

Of the 20 study participants, most were male (60 percent), adolescents (65 percent) and white (70 percent). Thirteen (65 percent) had solid tumors. Patients could describe “a good day” as having fewer side effects from the experimental therapy and fewer interruptions to their lives. “Bad days” were marked by interruptions to their usual activities and missing out on spending time with family and friends due to being at the hospital. A few study participants suggested that researchers add questions related to being away from home, family and friends and the ripple effect of treatment on other family members.

“Only by measuring and understanding self-reported symptoms and function in children and adolescents with incurable cancer can we adequately address threats to their quality of life and improve symptom control and supportive care,” Hinds and co-authors conclude. “By giving children a voice in the process, clinicians will be able to better anticipate and manage symptoms and thereby improve life for patients and their families.”

Kazue Hashimoto Torii

A brain’s protector may also be its enemy

Kazue Hashimoto Torii

By looking back to the earliest moments of embryonic brain development, Kazue Hashimoto-Torii, Ph.D. and her collaborators sought to explain the molecular and cellular bases for complex congenital brain disorders that can result from exposure to harmful agents.

When the brain is exposed to an environmental stressor all is not immediately lost. Brain cells have mechanisms that protect them against the ravages of alcohol and other toxic substances. One of these is a protein the cells make, known as Heat Shock Factor 1 (Hsf1), which helps to shield them from damage. The fetal brain also can make Hsf1, which protects its particularly vulnerable cells from environmental stressors that pregnant mothers are exposed to during gestation.

However, a new study suggests that this system is not perfect. Research led by Children’s National Health System scientists suggests that when too much Hsf1 is produced, it actually can impair the brain during development. While this finding was made in a preclinical model, it raises questions about neural risks for human infants if their mothers drink alcohol in the first or second trimester of pregnancy.

When fetuses are chronically exposed to harmful agents such as alcohol, ethanol or methyl mercury in utero, the experience can negatively affect fetal brain development in unpredictable ways. Some fetal brains show little or no damage, while others suffer severe damage. By looking at the earliest moments of embryonic brain development, an international research team that includes five Children’s National authors sought to explain the molecular and cellular bases for complex congenital brain disorders that can result from exposure to such harmful agents.

“From a public health perspective, there is ongoing debate about whether there is any level of drinking by pregnant women that is ‘safe,’ ” says Kazue Hashimoto-Torii, Ph.D., principal investigator in the Center for Neuroscience Research at Children’s National and senior author of the paper published May 2 in Nature Communications. “We gave ethanol to pregnant preclinical models and found their offspring’s neural cells experienced widely differing responses to this environmental stress. It remains unclear which precise threshold of stress exposure represents the tipping point, transforming what should be a neuroprotective response into a damaging response. Even at lower levels of alcohol exposure, however, the risk for fetal neural cells is not zero,” Hashimoto-Torii adds.

The cerebral cortex – the thin outer layer of the cerebrum and cerebellum that enables the brain to process information – is particularly vulnerable to disturbances in the womb, the study authors write. To fend off insult, neural cells employ a number of self-preservation strategies, including launching the protective Hsf1-Heat shock protein (Hsp) signaling pathway that is used by a wide range of organisms, from single-cell microbes to humans. Developing fetuses activate Hsf1-Hsp signaling upon exposure to environmental stressors, some to no avail.

To help unravel the neurological mystery, the researchers used a method that allows a single molecule to fluoresce during stress exposure. They tapped specific environmental stressors, such as ethanol, hydrogen peroxide and methyl mercury – each of which are known to produce oxidative stress at defined concentrations. And, using an experimental model, they examined the Hsf1 activation pattern in the developing cerebral cortex by creating a marker, an encoding gene tagged with a type of fluorescent protein that makes it glow bright red.

“Our results suggest that heterogeneous events of abnormal brain development may occur probabilistically – which explains patterns of cortical malformations that vary with each individual, even when these individuals are exposed to similar levels of environmental stressors,” Hashimoto-Torii adds.

Among the more striking findings, neural cells with excessively high levels of Hsf1-Hsp activation due to ethanol exposure experience disruptions to normal development, with delayed migration by immature cortical neurons. For the fetal brain to develop normally, neurons need to migrate to precise places in the brain at just the right time to enable robust neural connections. When neurons fail to arrive at their destinations or get there too late, there can be gaps in the neural network, compromising efficient and effective communication across the brain’s various regions.

“Even a short period of Hsf1 overactivation during prenatal development causes critical neuronal migration deficiency. The severity of deficiency depends on the duration of Hsf1 overactivation,” Hashimoto-Torii says. “Expression patterns vary, however, across various tissues. Stochastic response within individual cells may be largely responsible for variability seen within tissue and organs.”

The research team found one bright spot: Cortical neurons that stalled due to lack of the microtubule-associated molecule Dcx were able to regain their ability to migrate properly when the gene was replenished after birth. A reduction in Hsf1 activity after birth, however, did not show the same ability to trigger the “reset” button on neural development.

“The finding suggests that genes other than microtubule-associated genes may play pivotal roles in ensuring that migrating neurons reach their assigned destinations in the brain at the right time – despite the added challenge of excessive Hsf1 activation,” according to Hashimoto-Torii.

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Healthy Generations program recognized

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After a study evaluated 150 teen mothers, the Healthy Generations program at Children’s National was recognized for its effectiveness in reducing teen pregnancy, sexually transmitted infections and associated risk factors.

The Healthy Generations program at Children’s National Health System recently was added to the official list of evidence-based teen pregnancy prevention programs by the Office of Adolescent Health within the U.S. Department of Health and Human Services (HHS). For nearly 10 years, HHS has identified programs with evidence of effectiveness in reducing teen pregnancy, sexually transmitted infections and associated sexual risk behaviors.

Unlike a majority of the programs on the HHS list, which are based in the school setting and use a more traditional curriculum-based approach, Healthy Generations is one of the first HHS-recognized programs that reaches young families through routine pediatric primary care and is a relationship-based intervention. When compared with a more traditional program, the Generations approach can be tailored to meet the needs of individual families.

The program is also differentiated by how it integrates care: Providing primary care for parents and children in the same visit by the same provider/team, and making mental health and social work services available as part of pediatric primary care.

The HHS designation was earned as a result of a study that highlighted the teen pregnancy prevention program as a patient-centered medical home that has improved contraceptive use among teen mothers. The study observed 150 teen mothers who met the following requirements:

  • The mother was between the ages of 13-19
  • The child was 6 months or younger
  • The family was newly seeking care from the Healthy Generations program or the comparison group
  • The mother had full custody of her child
  • The mother did not have any physical, psychological or cognitive impairments that would  prohibit her from providing informed consent

Eighty-five teen mothers enrolled in the Healthy Generations program were compared to 65 teen mothers who utilized community-based pediatric primary care. In a series of questions answered during home-based interviews, research assistants were able to effectively determine contraceptive use among the study participants after 12-months of enrollment. Mothers in the Healthy Generations program were more likely to use contraception than the teen mothers in the comparison group. Although there were no significant differences in race and age, several additional variables such as living conditions, romantic involvement with the father of the child and high school status made a difference in contraceptive use among participants.

By providing family-centered primary care, comprehensive social work services and mental health screening and treatment, clinicians within the Healthy Generations program strive to form lasting relationships with the young parents to address pregnancy prevention more actively. Beginning as a “teen-tot” model, primary care that only includes pregnancy prevention, the program has evolved into a multidisciplinary relationship-based intervention that not only uses the “teen-tot” model but also goes significantly beyond it to meet the needs of families headed by adolescents. With continued efforts and more positive outcomes on the horizon, the program is well on its way to meeting its goals to prevent rapid repeat pregnancies in teen mothers and maybe someday prevent an initial teenage pregnancy.