Teenage boy sleeping

Longer concussion recovery in children connected to poor sleep

Teenage boy sleeping

A new research study suggests that adolescents who get a good night’s sleep after a sports-related concussion might be linked to a shorter recovery time.

Research presented at the American Academy of Pediatrics Conference in Orlando, Fla., concluded that young athletes who slept well after a concussion were more likely to recover within two weeks, while those that didn’t receive a good night’s rest increased their likelihood to endure symptoms for 30 days or more.

The design and method was observational, where sleep factors and recovery are examined in association with each other. While the design does not allow a strong causal relationship to be established, it does not report control of other possible mediating variables, its sample size and strength of the findings are strongly suggestive, and provide a rationale for further study of sleep as a critical factor in recovery.

According to Gerard Gioia, Ph.D., chief of the Division of Pediatric Neuropsychology at Children’s National Health System, clinicians should ensure that sleep is properly assessed post-concussion and appropriate sleep hygiene strategies should be provided to the patient and family.

The average age of the 356 participants in the study was 14. Researchers conducting the study had the participants complete a questionnaire called the Pittsburgh Sleep Quality Index. Based on the answers reported, the teens were grouped into two categories: 261 good sleepers and 95 poor sleepers.

“The study highlights the importance of sleep, a critical factor in the recovery from a concussion,” says Dr. Gioia, “These findings are highly consistent with our own clinical experience in treating children and adolescents with concussions in that poor sleep are a significant limiting factor in recovery.”

During the follow-up visits three months later, both groups of patients had improved, however the good sleepers continued to have significantly better symptoms and sleep scores.

Dr. Anna Penn uses a microscope

New model mimics persistent interneuron loss seen in prematurity

Dr. Anna Penn uses a microscope

Children’s research-clinicians created a novel preclinical model that mimics the persistent interneuron loss seen in preterm human infants, identifying interneuron subtypes that could become future therapeutic targets to prevent or lessen neurodevelopmental risks.

Research-clinicians at Children’s National Health System have created a novel preclinical model that mimics the persistent interneuron loss seen in preterm human infants, identifying interneuron subtypes that could become future therapeutic targets to prevent or lessen neurodevelopmental risks, the team reports Jan. 31, 2019, in eNeuro. The open access journal for Society for Neuroscience recognized the team’s paper as its “featured” article.

In the prefrontal cortex (PFC) of infants born preterm, there are decreased somatostatin and calbindin interneurons seen in upper cortical layers in infants who survived for a few months after preterm birth. This neuronal damage was mimicked in an experimental model of preterm brain injury in the PFC, but only when the newborn experimental models had first experienced a combination of prenatal maternal immune activation and postnatal chronic sublethal hypoxia. Neither neuronal insult on its own produced the pattern of interneuron loss in the upper cortical layers observed in humans, the research team finds.

“These combined insults lead to long-term neurobehavioral deficits that mimic what we see in human infants who are born extremely preterm,” says Anna Penn, M.D., Ph.D., a neonatologist in the Division of Neonatology and the Fetal Medicine Institute and a developmental neuroscientist at Children’s National Health System, and senior study author. “Future success in preventing neuronal damage in newborns relies on having accurate experimental models of preterm brain injury and well-defined outcome measures that can be examined in young infants and experimental models of the same developmental stage.”

According to the Centers for Disease Control and Prevention 1 in 10 infants is born preterm, before the 37th week of pregnancy. Many of these preterm births result from infection or inflammation in utero. After delivery, many infants experience other health challenges, like respiratory failure. These multi-hits can exacerbate brain damage.

Prematurity is associated with significantly increased risk of neurobehavioral pathologies, including autism spectrum disorder and schizophrenia. In both psychiatric disorders, the prefrontal cortex inhibitory circuit is disrupted due to alterations of gamma-aminobutyric acid (GABA) interneurons in a brain region involved in working memory and social cognition.

Cortical interneurons are created and migrate late in pregnancy and early infancy. That timing leaves them particularly vulnerable to insults, such as preterm birth.

In order to investigate the effects of perinatal insults on GABAergic interneuron development, the Children’s research team, led by Helene Lacaille, Ph.D., in Dr. Penn’s laboratory, subjected the new preterm encephalopathy experimental model to a battery of neurobehavioral tests, including working memory, cognitive flexibility and social cognition.

“This translational study, which examined the prefrontal cortex in age-matched term and preterm babies supports our hypothesis that specific cellular alterations seen in preterm encephalopathy can be linked with a heightened risk of children experiencing neuropsychiatric disorders later in life,” Dr. Penn adds. “Specific interneuron subtypes may provide specific therapeutic targets for medicines that hold the promise of preventing or lessening these neurodevelopmental risks.”

In addition to Dr. Penn and Lead Author Lacaille, Children’s co-authors include Claire-Marie Vacher; Dana Bakalar, Jiaqi J. O’Reilly and Jacquelyn Salzbank, all of Children’s Center for Neuroscience Research.

Financial support for research described in this post was provided by the National Institutes of Health under award R01HD092593, District of Columbia Intellectual Developmental Disabilities Research Center under award U54HD090257, Cerebral Palsy Alliance Research Foundation, Children’s National Board of Visitors, Children’s Research Institute and Fetal Medicine Institute.

Vittorio Gallo

Neurodevelopmental disorders: Developing medical treatments

Vittorio Gallo

Vittorio Gallo, Ph.D., Chief Research Officer, participates in the world’s largest general scientific gathering, leading panelists in a timely conversation about progress made so far with neurodevelopmental disorders and challenges that lie ahead.

The human brain is the body’s operating system. Imagine if rogue code worked its way into its hardware and software, delaying some processes, disrupting others, wreaking general havoc.

Neurodevelopmental disorders are like that errant code. They can occur early in life and impact brain development for the rest of the person’s life. Not only can fundamental brain development go awry, processes that refine the brain also can become abnormal, creating a double neural hit.  Adding to those complications, children with neurodevelopmental disorders like autism spectrum disorder (ASD) and Fragile X syndrome often contend with multiple, overlapping cognitive impairments and learning disabilities.

The multiple layers of complexities for these disorders can make developing effective medical treatments particularly challenging, says Vittorio Gallo, Ph.D., Chief Research Officer at Children’s National Health System and recipient of a coveted Senator Jacob Javits Award in the Neurosciences.

During the Feb. 16, 2019, “Neurodevelopmental Disorders: Developing Medical Treatments” symposium, Gallo will guide esteemed panelists in a timely conversation about progress made so far and challenges that lie ahead during the AAAS Annual Meeting in Washington, the world’s largest general scientific gathering.

“This is a very important symposium; we’re going to put all of the open questions on the table,” says Gallo. “We’re going to present a snapshot of where the field is right now: We’ve made incredible advances in developmental neuroscience, neonatology, neurology, diagnostic imaging and other related fields. The essential building blocks are in place. Where are we now in developing therapeutics for these complex disorders?”

For select disorders, many genes have been identified, and each new gene has the potential to become a target for improved therapies. However, for other neurodevelopmental disorders, like ASD, an array of new genes continue to be discovered, leaving an unfinished picture of which genetic networks are of most importance.

Gallo says the assembled experts also plan to explore major research questions that remain unanswered as well as how to learn from past experiences to make future studies more powerful and insightful.

“One topic up for discussion will be new preclinical models that have the potential to help in identifying specific mechanisms that cause these disorders. A combination of genetic, biological, psychosocial and environmental risk factors are being combined in these preclinical models,” Gallo says.

“Our studies of the future need to move beyond describing and observing in order to transform into studies that establish causality between the aberrant developmental processes and these constellations of neurodevelopmental disorders.”

Study authors Aaron Sathyanesan, Ph.D., Joseph Abbah, B.Pharm., Ph.D., Srikanya Kundu, Ph.D. and Vittorio Gallo, Ph.D.

Children’s perinatal hypoxia research lauded

Study authors Aaron Sathyanesan, Ph.D., Joseph Abbah, B.Pharm., Ph.D., Srikanya Kundu, Ph.D. and Vittorio Gallo, Ph.D.

Study authors Aaron Sathyanesan, Ph.D., Joseph Abbah, B.Pharm., Ph.D., Srikanya Kundu, Ph.D. and Vittorio Gallo, Ph.D.

Chronic sublethal hypoxia is associated with locomotor miscoordination and long-term cerebellar learning deficits in a clinically relevant model of neonatal brain injury, according to a study led by Children’s National Health System researchers published by Nature Communications. Using high-tech optical and physiological methods that allow researchers to turn neurons on and off and an advanced behavioral tool, the research team found that Purkinje cells fire significantly less often after injury due to perinatal hypoxia.

The research team leveraged a fully automated, computerized apparatus – an Erasmus Ladder – to test experimental models’ adaptive cerebellar locomotor learning skills, tracking their missteps as well as how long it took the models to learn the course.

The research project, led by Aaron Sathyanesan, Ph.D., a Children’s postdoctoral research fellow, was honored with a F1000 primevery good rating.” The Children’s research team used both quantitative behavior tests and electrophysiological assays, “a valuable and objective platform for functional assessment of targeted therapeutics in neurological disorders,” according to the recommendation on a digital forum in which the world’s leading scientists and clinicians highlight the best articles published in the field.

Calling the Erasmus Ladder an “elegant” behavioral system, Richard Lu, Ph.D., and Kalen Berry write that the Children’s National Health System research team “revealed locomotor behavior and cerebellar learning deficits, and further utilized multielectrode recording/optogenetics approaches to define critical pathophysiological features, such as defects in Purkinje cell firing after neonatal brain injury.”

Lu, Beatrice C. Lampkin Endowed Chair in Cancer Epigenetics, and Berry, an associate faculty member in the Cancer and Blood Diseases Institute, both at Cincinnati Children’s, note that the Children’s results “suggest that GABA signaling may represent a potential therapeutic target for hypoxia-related neonatal brain injury that, if provided at the correct time during development post-injury, could offer lifelong improvements.”

In addition to Sathyanesan, Children’s co-authors include Co-Lead Author, Srikanya Kundu, Ph.D., and Joseph Abbah, both of Children’s Center for Neuroscience Research, and Vittorio Gallo, Ph.D., Children’s Chief Research Officer and the study’s senior author.

Research covered in this story was supported by the Intellectual and Developmental Disability Research Center under award number U54HD090257.

little boy looking at gun

A ‘compelling call’ for pediatricians to discuss firearm safety

little boy looking at gun

The Children’s commentators point to the “extremely dangerous” combination of “the small curious hands of a young child” and “the easily accessible and operable, loaded handgun” and suggest that pediatricians who counsel families about safely storing weapons tailor messaging to the weapon type and the family’s reason for owning a firearm.

Paradoxically, as overall firearm ownership decreased in U.S. households with young children from 1976 to 2016, the proportion of these families who owned handguns increased. This shift in firearm preferences over decades from mostly rifles to mostly handguns coincided with increasing firearm-mortality rates in young children, researchers report Jan. 28, 2019, in Pediatrics.

“Almost 5 million children live in homes where at least one firearm is stored loaded and unlocked,” Kavita Parikh, M.D., a pediatric hospitalist at Children’s National Health System, and co-authors write in an invited commentary. “This study is a loud and compelling call to action for all pediatricians to start open discussions around firearm ownership with all families and share data on the significant risks associated with unsafe storage. It is an even louder call to firearm manufacturers to step up and innovate, test and design smart handguns, inoperable by young children, to prevent unintentional injury,” Dr. Parikh and colleagues continue.

The Children’s commentators point to the “extremely dangerous” combination of “the small curious hands of a young child” and “the easily accessible and operable, loaded handgun” and suggest that pediatricians who counsel families about safely storing weapons tailor messaging to the weapon type and the family’s reason for owning a firearm.

They also advocate for childproofing firearms stored in the home – through free or discounted locks, storing weapons separately from ammunition, and using personalized technology that limits the firearm’s potential to be used by children accidentally. According to a retrospective, cross-sectional study led by Children’s researchers, younger children are more likely to be shot by accident.

“The development of effective safety controls on firearms is not only attainable but could be the next big step towards reducing mortality, especially among our youngest. We as a society should be advocating for continued research to ‘childproof’ firearms so that if families choose to have firearms in the home, the safety of their children is not compromised,” Dr. Parikh and co-authors write.

In addition to Dr. Parikh, the senior author, the Pediatrics commentary co-authors include Lead Author Shilpa J. Patel M.D., MPH, emergency medicine specialist; and co-author Monika K. Goyal M.D., MSCE, assistant division chief and director of research in Children’s Division of Emergency Medicine.

new mom with baby

Fighting perinatal mood and anxiety disorders on multiple levels

new mom with baby

Over the past several decades, it’s become increasingly recognized that perinatal mood and anxiety disorders (PMADs), including postpartum depression, are more than just “baby blues.” They’re the most common complication of childbirth in the U.S., affecting about 14 percent of women in their lifetimes and up to 50 percent in some specific populations. PMADs can lead to a variety of adverse outcomes for both mothers and their babies, including poor breastfeeding rates, poor maternal-infant bonding, lower infant immunization rates and maternal suicides that account for up to 20 percent of postpartum deaths.

But while it’s obvious that PMADs are a significant problem, finding a way to solve this issue is far from clear. In a policy statement published December 2018 in the journal Pediatrics, the American Academy of Pediatrics recommends that pediatric medical homes coordinate more effectively with prenatal providers to ensure PMAD screening occurs for new mothers at well-child checkups throughout the first several weeks and months of infancy and use community resources and referrals to ensure women suffering with these disorders receive follow-up treatment.

To help solve the huge issue of PMADs requires a more comprehensive approach, suggests Lenore Jarvis, M.D., MEd, an emergency medicine specialist at Children’s National Health System. A poster that Dr. Jarvis and colleagues from Children’s Perinatal Mental Health Taskforce recently presented at the American Academy of Pediatrics 2018 National Convention and Exhibit in Orlando, Florida, details the integrated care to help women with PMADs that originated at Children’s National and is being offered at several levels, including individual, interpersonal, organizational, community and policy. The poster was ranked best in its section for the Council on Early Childhood.

At the base level of care for mothers with possible PMADs, Dr. Jarvis says, are the one-on-one screenings that take place in primary care clinics. Currently, all five of Children’s primary care clinics screen for mental health concerns at annual visits. At the 2-week, 1-, 2-, 4- and 6-month visits, mothers are screened for PMADs using the Edinburgh Postnatal Depression Scale, a validated tool that’s long been used to gauge the risk of postpartum depression. In addition, recent studies at Children’s neonatal intensive care unit (NICU) and emergency department (ED) suggest that performing PMAD screenings in these settings as well could help catch even more women with these disorders: About 45 percent of parents had a positive screen for depression at NICU discharge, and about 27 percent of recent mothers had positive screens for PMADs in the ED.

To further these efforts, Children’s National recently started a Perinatal Mental Health Taskforce to promote multidisciplinary collaboration and open communication with providers among multiple hospital divisions. This taskforce is working together to apply lessons learned from screening in primary care, the NICU and the ED to discuss best practices and develop hospital-wide recommendations. They’re also sharing their experiences with hospitals across the country to help them develop best practices for helping women with PMADs at their own institutions.

Furthering its commitment to PMAD screening, Children’s National leadership set a goal of increasing screening in primary care by 15 percent for fiscal year 2018 – then exceeded it. Children’s National is also helping women with PMADs far outside the hospital’s walls by developing a PMAD screening toolkit for other providers in Washington and across the country and by connecting with community partners through the DC Collaborative for Mental Health in Pediatric Primary Care. In April 2019, the hospital will host a regional perinatal mental health conference that not only will include its own staff but also staff from other local hospitals and other providers who care for new mothers, including midwives, social workers, psychologists, community health workers and doulas.

Finally, on a federal level, Dr. Jarvis and colleagues are part of efforts to obtain additional resources for PMAD screening, referral and treatment. They successfully advocated for Congress to fully fund the Screening and Treatment for Maternal Depression program, part of the 21st Century Cures Act. And locally, they provided testimony to help establish a task force to address PMADs in Washington.

Together, Dr. Jarvis says, these efforts are making a difference for women with PMADs and their families.

“All this work demonstrates that you can take a problem that is very personal, this individual experience with PMADS, and work together with a multidisciplinary team in collaboration to really have an impact and promote change across the board,” she adds.

In addition to Dr. Jarvis, the lead author, Children’s co-authors include Penelope Theodorou, MPH; Sarah Barclay Hoffman, MPP, Program Manager, Child Health Advocacy Institute; Melissa Long, M.D.; Lamia Soghier M.D., MEd, NICU Medical Unit Director; Karen Fratantoni M.D., MPH; and Senior Author Lee Beers, M.D., Medical Director, Municipal and Regional Affairs, Child Health Advocacy Institute.

AlgometRX

Breakthrough device objectively measures pain type, intensity and drug effects

AlgometRX

Clinical Research Assistant Kevin Jackson uses AlgometRx Platform Technology on Sarah Taylor’s eyes to measure her degree of pain. Children’s National Medical Center is testing an experimental device that aims to measure pain according to how pupils react to certain stimuli. (AP Photo/Manuel Balce Ceneta)

Pediatric anesthesiologist Julia C. Finkel, M.D., of Children’s National Health System, gazed into the eyes of a newborn patient determined to find a better way to measure the effectiveness of pain treatment on one so tiny and unable to verbalize. Then she realized the answer was staring back at her.

Armed with the knowledge that pain and analgesic drugs produce an involuntary response from the pupil, Dr. Finkel developed AlgometRx, a first-of-its-kind handheld device that measures a patient’s pupillary response and, using proprietary algorithms, provides a diagnostic measurement of pain intensity, pain type and, after treatment is administered, monitors efficacy. Her initial goal was to improve the care of premature infants. She now has a device that can be used with children of any age and adults.

“Pain is very complex and it is currently the only vital sign that is not objectively measured,” says Dr. Finkel, who has more than 25 years of experience as a pain specialist. “The systematic problem we are facing today is that healthcare providers prescribe pain medicine based on subjective self-reporting, which can often be inaccurate, rather than based on an objective measure of pain type and intensity.” To illustrate her point, Dr. Finkel continues, “A clinician would never prescribe blood pressure medicine without first taking a patient’s blood pressure.”

The current standard of care for measuring pain is the 0-to-10 pain scale, which is based on subjective, observational and self-reporting techniques. Patients indicate their level of pain, with zero being no pain and ten being highest or most severe pain. This subjective system increases the likelihood of inaccuracy, with the problem being most acute with pediatric and non-verbal patients. Moreover, Dr. Finkel points out that subjective pain scores cannot be standardized, heightening the potential for misdiagnosis, over-treatment or under-treatment.

Dr. Finkel, who serves as director of Research and Development for Pain Medicine at the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National, says that a key step in addressing the opioid crisis is providing physicians with objective, real-time data on a patient’s pain level and type, to safely prescribe the right drug and dosage or an alternate treatment.,

She notes that opioids are prescribed for patients who report high pain scores and are sometimes prescribed in cases where they are not appropriate. Dr. Finkel points to the example of sciatica, a neuropathic pain sensation felt in the lower back, legs and buttocks. Sciatica pain is carried by touch fibers that do not have opioid receptors, which makes opioids an inappropriate choice for treating that type of pain.

A pain biomarker could rapidly advance both clinical practice and pain research, Dr. Finkel adds. For clinicians, the power to identify the type and magnitude of a patient’s nociception (detection of pain stimuli) would provide a much-needed scientific foundation for approaching pain treatment. Nociception could be monitored through the course of treatment so that dosing is targeted and personalized to ensure patients receive adequate pain relief while reducing side effects.

“A validated measure to show whether or not an opioid is indicated for a given patient could ease the health care system’s transition from overreliance on opioids to a more comprehensive and less harmful approach to pain management,” says Dr. Finkel.

She also notes that objective pain measurement can provide much needed help in validating complementary approaches to pain management, such as acupuncture, physical therapy, virtual reality and other non-pharmacological interventions.

Dr. Finkel’s technology, called AlgometRx, has been selected by the U.S. Food and Drug Administration (FDA) to participate in its “Innovation Challenge: Devices to Prevent and Treat Opioid Use Disorder.” She is also the recipient of Small Business Innovation Research (SBIR) grant from the National Institute on Drug Abuse.

general school supplies

Studying the impact of later school start times

general school supplies

Teens have a biological preference to fall asleep later than younger children and adults, and wake up later, due to a delayed release of hormones that promote sleep. This timing coincides with puberty and makes it harder for middle and high school students to fall asleep early – regardless of 5 a.m. alarms and 7:17 a.m. school start times.

After studying this trend among nearly 1,000 seventh and eighth-grade students in 11 middle schools within a Mid-Atlantic school district, Daniel Lewin, Ph.D., a sleep medicine specialist, pediatric psychologist and associate director of the sleep medicine program at Children’s National Health System, coauthored and published research entitled “Later Start, Longer Sleep: Implications of Middle School Start Times” in the Journal of School Health, which outlines the benefits of delaying school start times.

The research team divided students into two groups: Close to 650 students attended eight late-starting middle schools, where school started at 8 a.m., while nearly 350 students attended early-starting middle schools, where school started at 7:23 a.m.

Students starting school 37 minutes later, despite going to bed 15 minutes later than peers attending an earlier-starting school, got 17 minutes more sleep each night and were more likely to report feeling wide awake during class. The researchers predicted this later-starting school model would translate to students getting an extra 75 minutes of sleep a week – roughly 51 hours of extra sleep each school year. These researchers find that every two minutes in delayed school start times results in one minute of additional sleep each night for children and teens.

Sleep Chart

Middle and high school students should get 8.5 to 10.5 hours of sleep each night, ideally between 9 p.m. and 8:30 a.m. for 12- to 15-year-olds and 10:30 p.m. and 9 a.m. for 16- to 18-year-olds.

The American Academy of Pediatrics (AAP) published similar research in their journal, Pediatrics, about the benefits of letting teens catch up on sleep, citing a reduced risk of students being overweight, getting into car accidents or suffering from depression as well as a greater likelihood of having better grades, higher test scores and a better quality of life. AAP recommends schools start at 8:30 a.m. or later to allow students to get 8.5 to 9.5 hours of sleep each night and issued a statement in 2014, entitled “School Start Times for Adolescents.”

Dr. Lewin continues to track these benefits and works with schools to implement the changes. He recently wrote an editorial, entitled “All the Clocks Are Ticking: Sleep Health and Metabolism,” for the Journal of Adolescent Health about the correlation between improved sleep health, mental and physical health and academic performance, explaining how circadian clocks, present on a cellular level, influence behavior and metabolism.

While pushing school start times back requires an immediate investment of rearranging travel routes, bell schedules and after-school activities, several school districts near Washington, D.C., from Virginia Beach to Fairfax County, are adopting this public health model.

An economic analysis conducted by the RAND Corporation finds that after two years, the benefits of reorganizing school start times outweigh the costs.

Lenore Jarvis at #thisisourlane meeting

#thisisourlane: Pediatricians call for safer firearm storage, enhanced research funding

Lenore Jarvis at #thisisourlane meeting

The 2-year-old scampered unexpectedly into a room, startling a family member. Thinking the toddler was an intruder, the family member fired, hitting the child in the chest.

In the emergency department at Children’s National Health System, Lenore Jarvis, M.D. MEd, FAAP, emergency medicine specialist, and colleagues tried to save the boy’s life, inserting tubes, transfusing blood and attempting to restart his dying heart via CPR. The Children’s team was unsuccessful and emerged covered in the blood of a boy whose death was heartbreaking and preventable.

Firearm violence is a leading cause of childhood traumatic death and injury,” Dr. Jarvis told attendees of a recent congressional news conference intended to prod the incoming Congress to take more concrete action to prevent firearm violence. She provided snapshots of some of the countless lives of local youths cut short by firearms, including an 8-year-old girl killed on a playground in a drive-by shooting, a 13-year-old young man murdered during a fight, a 15-year-old young woman who committed suicide and an entire family who died from firearm injuries.

“I wish it were not so. But these stories are endless. In our emergency department, the effects of gun violence are frequent, life-altering and personal,” Dr. Jarvis said.

The #ThisISOurLane press conference, convened by U.S. Rep. Robin Kelly, (D-Illinois), included haunting stories by clinicians from across the nation about the devastating impact of firearm injuries on children and youth. According to a retrospective, cross-sectional study led by Children’s researchers, younger children are more likely to be shot by accident, and odds are higher that older youths are victims of an assault involving a firearm.

“Gun violence is a public health crisis and should be addressed as such. We need to reduce the numbers of suicides, homicides and accidental gun deaths in children,” added Dr. Jarvis, who also is president-elect of the District of Columbia Chapter of the American Academy of Pediatrics.

During the news conference, U.S. Rep. Frank Pallone Jr., (D-New Jersey), vowed that the House Energy and Commerce Committee he chairs this session will move forward languishing bills, including funding the Centers for Disease Control Prevention to conduct firearms violence research.

smiling baby sleeping

The science behind optimal sleep health

smiling baby sleeping

Children younger than age 2 need at least 12 hours of sleep each day.

As families and parents renew their interest in health in the new year, pediatricians can take advantage of this momentum by talking about one area absent from common New Year’s resolutions lists: getting enough sleep.

Like diet, exercise and activities that keep your brain sharp, such as reading or learning a new language, healthful sleep patterns play a vital role in supporting physical health and cognitive performance – especially for children and teens.

Here are a few tips parents and pediatricians can use, based on research published by Daniel Lewin, Ph.D., a pediatric psychologist and sleep medicine specialist at Children’s National Health System.

Understand how much sleep each child needs.

The typical range of recommended sleep, such as eight to 10 hours each night, varies for each child. A 16-year-old may do well with 8.5 hours of sleep, while a 6-year-old may need 13 hours of sleep to stay alert. Their body is still rapidly developing. The timing of sleep matters, too, due to a child’s natural circadian rhythm. A chart below details sleep recommendations based on age.

Sleep Chart

Turn a child’s bedroom into a healthful sleep chamber.

Encouraging children to fall asleep by 7 or 9 p.m. may require planning – outside of maintaining regular sleep schedules. To start, make it easy to promote sound sleep by eliminating distractions, including clocks and electronic devices, which might sit next to a child’s bed and distract him or her from getting a good night’s sleep.

Reserve a designated area for homework and study hours outside of the bedroom, which helps reinforce that the bed is a place for sleep and rest. Avoid doing any complicated routines or activities that might cause excitement right before bed, such as assembling a new toy or playing a high-stakes game.

Follow the same rules for conversations: Don’t have talks that might evoke excitement, like the next Disneyworld vacation, or stress, such as bringing the next day’s spelling test up right before bed. By creating a calm zone, you’ll avoid energizing the biological ‘burst zone,’ a rush of energy that occurs in short bursts before one prepares to rest for the night. Keep conversations and routines simple and soothing. Reading, stretching or practicing mindfulness and yoga are complementary activities children can practice at least 15 minutes before bedtime.

Schedule activities about circadian rhythms.

Understanding when a child sleeps best is just as important as understanding how much sleep is essential to support optimal health. A student in high school is biologically wired to stay up past 9 p.m. due to a later release of hormones that promote sleep. This is one reason some school systems are experimenting with later middle and high school start times, which, according to a review in the Journal of School Health, increases a student’s chance of feeling ‘wide awake’ and alert in the classroom.

If you have control of your student’s schedule, plan around it. For instance, schedule activities for a 17-year-old in the late morning, if possible, while allowing time in the afternoon for a young child to take a nap.

These starter tips serve as ways to strengthen sleep quality. Learn more about Dr. Lewin’s research at PubMed, view a few of his blogs for parents at U.S. News & World Report and learn about the link between sleep and health at the National Institutes of Health. If you experience recurring problems, such as sleep apnea, insomnia, sleep walking, ongoing sleep disruptions or excessive daytime sleepiness, connect with a health care provider.

Girl complaining to doctor about stitch in side

Treating children and teens with undiagnosed stomach problems?

Girl complaining to doctor about stitch in side

Children and teens exhibiting symptoms of orthostatic intolerance (OI) or gastrointestinal (GI) distress may benefit from a new diagnostic tool, pairing a tilt table test with manometry, which combines the two fields and can yield better results in some cases than testing for either symptom alone.

A combination of two diagnostic tools to test for cardiovascular and gastrointestinal function provides potential answers for patients left feeling sick and with inconclusive results.

Imagine you’re a pediatrician and see a teenage patient who complains of gastrointestinal (GI) distress: nausea, bloating and abdominal pain. She hasn’t altered her diet or taken new medications. An ultrasound of her internal organs from a radiologist comes back clear. You refer her to a gastroenterologist to see if her GI tract, a tube that runs from her mouth to the bottom of her stomach, and houses many organs, including the esophagus, intestines and stomach, has inflammation or structural anomalies. The symptoms, depending on the severity of the problem, could range from mildly irritating to intrusive, leading to missed days from work or school.

The gastroenterologist may analyze her GI tract with an endoscope and often takes a biopsy to look at a sample of the intestinal lining for lesions and inflammation. The results, like the ultrasound, may come back clear.

While an “all-clear” diagnosis is good news for patients awaiting the results of a test for a disease process, these results frustrate patients with chronic GI problems. Without a definitive diagnosis, these patients and their doctors often worry about ‘missing something’ and are left searching for solutions—and scheduling more tests.

Research published in The Journal of Pediatrics, entitled “Utility of Diagnostic Studies for Upper Gastrointestinal Symptoms in Children with Orthostatic Intolerance,” and discussed on Oct. 24 at the 2018 Single Topic Symposium at the Annual Meeting of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN), entitled Advances in Motility and in Neurogastroenterology (AIMING) for the future, now provides doctors with preliminary answers and a tool to test for orthostatic intolerance (OI).

The research team, a mix of cardiologists and gastroenterologists from Children’s National Health System, examined consecutive medical records of over 100 children and young adults with OI, a result of insufficient blood flow returning to the heart after standing up from a reclined position, which could result in lightheadedness or fainting, as well as gastrointestinal symptoms, including nausea and vomiting.

All patients had antroduodenal manometry, a test that uses a catheter, placed during an upper GI endoscopy, to measure the motility of the stomach and of the upper small intestines, in conjunction with a tilt-table test to measure blood pressure and heart rate changes with a change in posture. A gastric emptying study (GES) was performed in about 80 percent of the patients. The study found that antroduodenal manometry combined with the tilt-table test provided the best insights into adolescents and young adults with OI and GI symptoms.

Anil Darbari, M.D., MBA, a study author and the director of the comprehensive GI motility program at Children’s National, mentions the research highlights advances in the field of GI motility. It provides insights into the underlying pathophysiology of the conditions affecting the function of the GI tract and a roadmap to offer a multidisciplinary approach to help patients with sensory or motor GI motility problems, including those with OI or postural orthostatic tachycardia syndrome (POTS).

According to the National Institutes of Health, POTS is a form of OI, which affects more than 500,000 Americans, and most cases are diagnosed in women between the ages of 15 and 50. The cause of POTS is unknown but may begin after major surgery, trauma, a viral illness, pregnancy or before menstruation. The goal of treatment is to improve circulation and alleviate associated symptoms, including blurred vision, headaches, shortness of breath, weakness, coldness or pain in the extremities and GI symptoms, such as nausea, cramps and vomiting.

Dr. Darbari mentions that when his team and other GI motility doctors see patients for predominant GI symptoms, the patients may be frustrated because their primary GI providers often cannot find anything  wrong with their GI tracts— based on the routine testing including laboratory studies, radiological tests and endoscopy with biopsy, at least that they can find. Dr. Darbari isn’t surprised since the symptoms of GI distress and POTS often overlap. Nausea is seen in up to 86 percent of OI patients, a number similar to lightheadedness, which affects 87 percent of OI or POTS patients.

“The physicians and GI specialists are frustrated because they can’t find anything wrong so they think the patient is making up these symptoms,” says Dr. Darbari. “It’s a dichotomous relationship between the patient and physician because of the traditional tests, which almost always come back normal. This is where the field of neurogastroenterology or GI motility comes in. We’re able to explain what’s happening based on the function or motility of the GI tract.”

Dr. Darbari mentions that combining these two fields—testing for cardiovascular function and GI motility—provides the science behind these sought-out answers. The problem, and pain that patients feel affects the neuro-gastro part of the intestine, as opposed to appearing as inflammation, lesions or structural damage.

When asked about how this research may change the field of gastroenterology, Dr. Darbari explains that it’s important to continue to study the underlying mechanisms that control these symptoms. More research, especially from the basic science point of view, is needed to look at how the nerves interact with the muscles. He hopes that scientists will look at the nerve and how the nerve is laid out, as well as how the GI function interacts with that of the cardiovascular system.

Understanding this relationship will help gastroenterologists better understand how to manage these conditions. Right now the solutions involve integrative therapy, such as prescribing sensory modulation, which could include pain management, behavior modification, massage therapy, aroma therapy, acupuncture, meditation and/or hypnotherapy, in addition to or in place of medications to decrease sensory perception in the GI tract. The treatment varies for each patient.

The prospect of giving families answers, and continuing to guide treatment based on the best science, is also what motivates Lindsay Clarke, PA-C, a study author and the coordinator of the GI Motility program at Children’s National, to continue to search for solutions.

“I spend a lot of time on the phone with these families between appointments, between visits, and between procedures,” says Clarke. “They have seen other gastroenterologists. They have had GI testing. Nothing comes back to show why they are feeling this way. This research gives them real information. We can now say that your symptoms are real. We’ve found the connection between what you’re feeling and what’s going on inside of your body.”

“It’s a huge quality-of-life issue for these patients,” adds Dr. Darbari about the benefits of having data to guide treatment. “These are often well-appearing kids. People, including medical professionals, often brush off their symptoms because the patients look good. They don’t have lesions or any redness or swelling, compared, for example, to patients with inflammatory bowel disease, who appear unwell or who have clear physical, laboratory and radiological findings. They don’t appear to be broken.”

The study authors note patient dissatisfaction, health care provider frustration, high costs of care and potentially hazardous diagnostic studies often accompany endoscopic and radiologic studies that fail to reveal significant abnormalities.

Clarke envisions that the use of the dual tilt-table test and antroduodenal manometry may also encourage families to explore multidisciplinary treatment earlier on in a patient’s life, such as physical therapy or sensory therapy, to alleviate symptoms and the overall number of outpatient visits. It provides them the understanding to enroll in a multidisciplinary and comprehensive programs, and programs that offer complementary therapies for management of these complex symptoms.

“This study shows that it’s important to look beyond individual organs and to treat the whole child,” says Clarke. “We’re still not sure about which kinds of sensory therapies work best and we don’t want to overstate the aims of integrative treatments, especially since it may vary for each child, but as clinicians we’re looking forward to talking to families about potential solutions, cautiously, as the science unfolds.”

Additional study authors include Lana Zhang, M.D., Jeffrey Moak, M.D., Sridhar Hanumanthaiah, M.B.B.S., and Robin Fabian, R.N., from the Division of Cardiology at Children’s National, John Desbiens, B.S., from the Division of Gastroenterology at Children’s National, and Rashmi D. Sahay, M.D., from the Division of Biostatistics and Epidemiology at Cincinnati Children’s Hospital Medical Center.

PICU room

How to help bereaved families

PICU room

To help clinicians provide better care to families after children die, Tessie W. October, M.D., MPH, and colleagues recently published an article on this topic in a special supplement to Pediatric Critical Care Medicine on death and dying.

Death and dying are always difficult topics to discuss at hospitals. They’re especially hard conversations when they occur within pediatric intensive care units (PICUs), says Tessie W. October, M.D., MPH, a critical care specialist at Children’s National.

“It’s almost easier to pretend that children don’t die in the ICU. But they do,” Dr. October says.

Tragically, some children do die in ICUs. However, even when pediatric patients die, Dr. October adds, the pediatric care team’s relationship with the bereaved family continues. Knowing how to help vulnerable families during these trying times and ensuring they have needed resources can be critical to lessening the health and social consequences of grief. To help clinicians provide better care to families after children die, Dr. October and colleagues recently published an article on this topic in a special supplement to Pediatric Critical Care Medicine on death and dying.

The multi-institutional research team performed a narrative literature review for this budding field. They pored through more than 75 papers to better understand the health outcomes of parents whose child died within a PICU and the different ways that hospitals help families cope with these tragedies.

The researchers found a range of detrimental health outcomes, from a significantly increased risk of parental death in the aftermath of a child’s death to higher rates of myocardial infarction, cancer and multiple sclerosis. Bereaved parents used more health care resources themselves, took more sick days and had more sleep problems than parents who weren’t bereaved.

Likewise, parents whose child died were at a high risk of experiencing mental health conditions including complicated grief, anxiety, depression and posttraumatic stress disorder. Divorce was eight times higher among bereaved parents compared with the general population, and financial crises were common after voluntary or involuntary unemployment.

Knowing which risks parents could face can help the care team respond better if a child dies, Dr. October explains. Their review highlighted simple ways to support families in the immediate aftermath of a child’s death and beyond, such as:

  • Giving parents the opportunity to spend time alone with the child’s body
  • Allowing friends, family and others to visit at the parents’ discretion and
  • Providing easy access to professional support, such as chaplains, social workers and grief coordinators.

Even simple acts such as closing doors and blinds to provide privacy can be helpful, Dr. October says.

An ongoing relationship with health care providers is also important for helping parents grieve, she adds. Children’s National is among hospitals across the country to set up meetings for parents and other family members within weeks of a child’s death. This gives parents a chance to ask questions about what happened in the confusing blur of the PICU and to gather resources for themselves and surviving siblings. Children’s National also provides ongoing support through periodic calls, sending sympathy cards, attending funeral services and in a special annual memorial during which surviving family members release butterflies.

“Our role doesn’t end when a child dies,” Dr. October says. “To help parents through bereavement, we need to maintain that strong connection.”

Another way to help bereaved families is to make sure they have adequate information, she adds, particularly about the confusing subject of brain death. In a different study recently published in Chest Journal, Dr. October and Children’s colleagues sought to understand which information the public typically accesses about this topic.

The team searched Google and YouTube using “brain dead” and “brain death” as search terms. They evaluated the top 10 results on both sites, assessing the accuracy of information using 2010 guidelines released by the American Academy of Neurology. They also assessed the reading level of websites and evaluated comments about the YouTube videos for content accuracy and tone.

They found that there was inaccurate information on four of the 10 websites, six of the 10 videos and within 80 percent of the YouTube comments. Most of these inaccuracies dealt with using terms like brain death, coma and persistent vegetative state interchangeably. “These conditions are very different and affect how we treat patients,” Dr. October says.

The average reading level of the websites was 12th grade, far too sophisticated for much of the public to comprehend, she adds. And the majority of comments on the YouTube videos were negative, often disparaging clinicians and deriding organ donation.

“It’s really important for providers to recognize that this is an emotionally laden topic, and a lot of times, families come to us with information that’s not always true,” she says. “That’s why it’s especially important for the field to respond with empathy and care.”

In addition to Dr. October, co-authors of the Pediatric Critical Care Medicine study include Karen Dryden-Palmer, R.N., MSN, Ph.D., The Hospital for Sick Children; Beverley Copnell, Ph.D., BAppSc, R.N., Monash University; and Senior Author Kathleen L. Meert, M.D., FCCM, Children’s Hospital of Michigan. Dr. October’s co-authors for the Chest Journal article include Lead Author, Amy H. Jones, M.D., and co-author Zoelle B. Dizon, BA, both of Children’s National.

CASD Posters

Bridging gaps in autism care through technology

CASD Posters

CASD Faculty Member and Clinical Psychologist, Dr. Allison Ratto (top left); Postdoctoral Fellow, Dr. Marissa Miller, (top right); and Research Assistants, Eleonora Sadikova (bottom left) and Laura Saldana (bottom right) presented posters at ABCT.

Technology’s potential to improve care delivery and reduce human suffering were the key focus of discussion at the recent Annual Convention of the Association for Behavioral and Cognitive Therapies (ABCT), held in Washington, D.C.

Within ABCT’s Autism Spectrum and Developmental Disabilities Special Interest Group (ASDD SIG), presentations showcased tools that leverage technology to better meet the needs of both autistic people and the clinicians who care for them. Researchers from the Center for Autism Spectrum Disorders (CASD) at Children’s National took center stage at the ASD focused group to share information about novel developments underway that harness technology for children and families.

Lauren Kenworthy, Ph.D., director of CASD, served as the keynote speaker for the ASDD SIG Meeting. She also chaired a panel, “Leveraging Technology to Improve Autism Acceptance and Treatment” and presented, ” Online Parent Training Modules to Improve Executive Function in Autistic Children” about the e-Unstuck and On Target Parent Training Study, which adapts CASD’s successful classroom-based Unstuck and On Target toolkit for children ages 5 to 10 to an online platform so more families can benefit from the program’s skills and strategies.

Dr. Kenworthy was honored with the 2018 Transformative Contribution Award from the ABCT Autism Spectrum and Developmental Disabilities Special Interest Group for her lifetime of contributions to better understanding and better interventions for young people with ASD.

“It was a special honor to receive this recognition from ABCT this year, when the annual meeting is here in our home city,” says Dr. Kenworthy. “The Center for Autism Spectrum Disorders is focused on developing technology solutions that deliver therapies to everyone who needs them, no matter where they live, and technology is one powerful and promising way we can bridge care gaps both in the Washington, D.C. region and really, around the world.”

CASD Talks

Dr. Lauren Kenworthy presenting during the panel she chaired (top); presenting to the ASDD SIG (bottom left); and receiving the ASDD SIG Transformative Award from ASDD SIG Awards Committee Chair, Dr. Tyler Hassenfeldt (bottom right).

In addition to Dr. Kenworthy, several other CASD researchers presented research during panels and poster presentations, including:

  • Panel Presentation: Efficacy of a Parent-Mediated Sexual Education Curriculum for Youth With ASD”– Cara Pugliese, Ph.D.
  • Poster presentations:
    • “Evidence of Enhanced Social Skills in Young Dual-Language Learners on the Autism Spectrum”- Allison Ratto, Ph.D. (first author)
    • “Exploring Contributors to Parents’ Ideal and Realistic Goals for Involvement in School Training”-Marissa Miller, Ph.D. (first author)
    • “Examining Caregiver Well-Being and Service Use between Latino and Non-Latino Caregivers”-Laura Saldana (first author)
    • “Pre-Pubertal Signs of Future Gender Dysphoria in Youth with ASD”-Eleonora Sadikova (first author)

The Association for Behavioral and Cognitive Therapies Annual Convention has been held for more than half a century. The gathering includes 3,500-plus mental health professionals and students who specialize in cognitive and behavioral therapies.

emergency signs

Disparities in who accesses emergency mental health services

emergency signs

A Children’s research team found the number of children and adolescents visiting the nation’s emergency departments due to mental health concerns continued to rise at an alarming rate from 2012 through 2016, with mental health diagnoses for non-Latino blacks outpacing such diagnoses among youth of other racial/ethnic groups.

The demand for mental health services continues to be high in the U.S., even among children. The Centers for Disease Control and Prevention (CDC) reports that one in seven U.S. children aged 2 to 8 had a diagnosed mental, behavioral or developmental disorder. In addition, 3 percent of U.S. children aged 3 to 17 had a diagnosis of anxiety, and 2.1 were diagnosed with depression, according to the CDC.

Knowing which children use mental health services can help health care providers improve access and provide more targeted interventions.

Children’s researchers recently investigated this question in the emergency room setting, reporting results from their retrospective cross-sectional study at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition. The research team found the number of children and adolescents visiting the nation’s emergency departments due to mental health concerns continued to rise at an alarming rate from 2012 through 2016, with mental health diagnoses for non-Latino blacks outpacing such diagnoses among youth of other racial/ethnic groups.

“Access to mental health services among children can be difficult, and data suggest that it can be even more challenging for minority children compared with non-minority youths,” says Monika K. Goyal, M.D., MSCE, assistant division chief and director of research in the Division of Emergency Medicine at Children’s National Health System and the study’s senior author. “Our findings underscore the importance of improving access to outpatient mental health resources as well as expanding capacity within the nation’s emergency departments to respond to this unmet need.”

An estimated 17.1 million U.S. children are affected by a psychiatric disorder, making mental health disorders among the most common pediatric illnesses. Roughly 2 to 5 percent of all emergency department visits by children are related to mental health concerns. The research team hypothesized that within that group, there might be higher numbers of minority children visiting emergency departments seeking mental health services.

To investigate this hypothesis, they examined Pediatric Health Information System data, which aggregates deidentified information from patient encounters at more than 45 children’s hospitals around the nation. Their analyses showed that in 2012, 50.4 emergency department visits per 100,000 children were for mental health-related concerns. By 2016, that figure had grown to 78.5 emergency department visits per 100,000 children.

During that same five-year time span, there were 242,036 visits by children and adolescents 21 and younger with mental health-related issues*. Within that group:

  • The mean age was 13.3
  • Nearly 55 percent were covered by public insurance
  • 78.4 per 100,000 non-Latino black children received mental health-related diagnoses and
  • 51.5 per 100,000 non-Latino white children received mental health-related diagnoses.

“When stratified by race and ethnicity, mental health-related visits to the nation’s emergency departments rose for non-Latino black children and adolescents at almost double the rate seen for non-Latino white children and adolescents,” Dr. Goyal adds. “These children come to our emergency departments in crisis, and across the nation children’s hospitals need to expand mental health resources to better serve these vulnerable patients.”

Because the study did not include reviews of individual charts or interviews with patients or providers, the reason for the disparate demand for mental health resources remains unclear.

*The number of patient visits during the five-year study period was revised on Nov. 1 2018, after updated analyses.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Racial disparities in pediatric mental health-related emergency department visits: a five-year, multi-institutional study.”

Anna Abrams, M.D.; Gia Badolato, MPH; Robert McCarter Jr., ScD; and Monika K. Goyal, M.D., MSCE

newborn kangaroo care

Boosting parental resilience in the NICU

newborn kangaroo care

Preliminary findings from an ongoing cross-sectional study presented during the American Academy of Pediatrics 2018 National Conference & Exhibition suggests a strong relationship between resilience and the presence of social support, which may help parents to better contend with psychological distress related to their preterm infant being in the NICU.

Resilience is the remarkable ability of some people to bounce back and overcome stress, trauma and adversity. Being resilient is especially important for parents whose babies are born prematurely – a condition that predisposes these children to numerous health risks both immediately and far into the future and that often triggers a stay in the neonatal intensive care unit (NICU). According to the Centers for Disease Control and Prevention, about 1 in 10 U.S. infants was born preterm in 2016.

Parents of these vulnerable newborns who feel less resilient may experience more symptoms of psychological distress, including depression and anxiety. However, preliminary findings from an ongoing cross-sectional study presented during the American Academy of Pediatrics (AAP) National Conference & Exhibition suggests a strong relationship between resilience and the presence of social support, which may help parents to better contend with psychological distress related to their preterm infant being in the NICU.

“Oftentimes, parenting a child in the NICU can be a time of crisis for families,” says Ololade A. Okito, M.D., FAAP, a Neonatal-Perinatal Medicine Fellow at Children’s National Health System who presented the preliminary study results during the 2018 AAP conference. “Studies have indicated a relationship between higher resilience and a reduction in psychological stress in other groups of people. However, it was unclear whether that finding also applies to parents of infants in the NICU.”

Because parental psychological distress can impact the quality of parent-child interactions, the Children’s research team wants to evaluate the relationship between resilience and psychological distress in these parents and to gauge whether activities that parents themselves direct, like the skin-to-skin contact that accompanies kangaroo care, helps to bolster resiliency.

So far, they have analyzed data from 30 parents of preterm infants in the NICU and used a number of validated instruments to assess parental resilience, depressive symptoms, anxiety, NICU-related stress and perceived social support, including:

The infants were born at a mean gestational age of 29.2 weeks. When their newborns were 2 weeks old:

  • 44 percent of parents (16 of 30) reported higher resilience
  • 37 percent of parents (11 of 30) screened positive for having elevated symptoms of depression and
  • 33 percent of parents had elevated anxiety.

“These early findings appear to support a relationship between low parental resilience scores and higher scores for depression, anxiety and NICU-related stress. These same parents were less likely to participate in kangaroo care and had lower social support. By contrast, parents who had more social support – including  receiving support from family, friends and significant others – had higher resilience scores,” says Lamia Soghier, M.D., FAAP, CHSE, Medical Unit Director of Children’s Neonatal Intensive Care Unit and senior study author.

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. The research team hopes to complete study enrollment in early 2019.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Parental resilience and psychological distress in the neonatal intensive care unit (PARENT) study.”

Ololade A. Okito, M.D., FAAP, Neonatal-Perinatal Medicine Fellow and presenting author; Yvonne Yui, M.D.; Nicole Herrera, MPH, Children’s Research Institute; Randi Streisand, Ph.D., Chief, Division of Psychology and Behavioral Health; Carrie Tully, Ph.D.; Karen Fratantoni, M.D., MPH, Medical Director of the Complex Care Program; and Senior Author, Lamia Soghier, M.D., FAAP, CHSE, Medical Unit Director, Neonatal Intensive Care Unit; all of Children’s National Health System.

Telemedicine

A rare prescription: Providing children with palliative care

Telemedicine

A pilot program at Children’s National enabled parents of children with extremely rare diseases to receive in-person or virtual health consultations with a trained provider.

Pediatric advance care planning (pACP) and making complex  medical decisions is especially difficult for parents of children with extremely rare diseases. Imagine if your child is the only person in the world with a rare disease that may limit basic functions: eating, breathing, walking and talking. Now, imagine you are presented with two scenarios: Experiment with a new drug to see if it improves your child’s conditions or plan for near-future, end-of-life care.

While these types of difficult decisions for parents of children with rare diseases are common, a new counseling model, based on a four-session pilot program conducted at Children’s National, aims to ease this process by providing parents with a comprehensive support plan.

On Oct. 15 and 16, Maureen Lyon, Ph.D., a clinical psychologist at Children’s National and a professor of pediatrics at the George Washington University School of Medicine and Health Sciences, will present “Living on the Precipice: The Journey of Children with Rare Diseases and Their Families” at a poster session at the National Organization for Rare Disorders’ Rare Disease and Orphan Products Breakthrough Summit at the Marriott Wardman Park in Washington.

Dr. Lyon will highlight key take-home points she observed during the pilot program:

  • Background: Eight families were recruited for the pilot program and seven enrolled. Six completed the four-session program, which was spread out over two months.
    • All parents were mothers, but two fathers joined for the goal-planning care conversation sessions. Some families brought their children to visits.
    • Five parents were married and two were single.
    • Four families identified as Caucasian, three families identified as African American, and one family identified as American Indian or Alaska Native.
  • Visits: About half of the families – three – attended the sessions at Children’s National. Four used the telemedicine option. A research nurse, clinical psychologist and advanced practice nurse participated in the 60- to 90-minute sessions.
  • Plans: The families discussed basic palliative care needs, such as comprehensive care coordination, which is highly individualized, before discussing their goals of care. After their needs and goals were discussed, the families created advance care plans to guide them during a medical crisis.
  • Results: Out of the six parents who completed the study, the mean positive caregiver appraisal score increased from 4.5. To 4.7, mean family well-being increased from 3.9 to 4.1, and the mean score for meaning and peace increased from 21.4 to 23.3. The scores were calculated by using the Carer Support Needs Assessment Tool (CSNAT) during the assessment and with modified protocols to assess quality of life and caregiver appraisal after the intervention.
Maureen Lyon

“The goal of palliative care is to optimize quality of life for children with life-threatening illnesses and their families by anticipating, preventing and treating suffering in all its forms,” explains Maureen Lyon, Ph.D. “This is delivered throughout illness and addresses physical, intellectual, emotional, social and spiritual needs.”

“These sessions increased a family’s sense of overall well-being,” says Jessica Thompkins, B.S.N., R.N., C.P.N., a research nurse coordinator with the FAmily CEntered Advanced Care Planning Team (FACE) and a co-author of the poster. “The families felt better just by knowing that they had time scheduled each week to connect with a trained medical provider to discuss a range for options they need as a caregiver, from everyday care at home to long-term health care planning at the hospital.”

The top-rated support need identified by all parents, according to the survey: “Knowing what to expect in the future when caring for their children.”

“The goal of palliative care is to optimize quality of life for children with life-threatening illnesses and their families by anticipating, preventing and treating suffering in all its forms,” says Dr. Lyon. “This is delivered throughout illness and addresses physical, intellectual, emotional, social and spiritual needs.”

The researchers would like to use this pilot to partner with other medical centers to create an evidence-based template to support the palliative care needs of family caregivers who have children with life-limiting rare diseases. Their goal is to improve a family caregiver’s quality of life, over time, and increase the completion and documentation of advance care plans for children of all ethnic and racial groups.

Rare diseases are defined as a disease that affects fewer than 200,000 people in the U.S. Extremely rare diseases, including those observed in this pilot, may affect just one or a few people in the world.

The rare disease pilot program is based on previous pACP models with adolescent HIV and pediatric cancer populations.

Additional poster authors include Jichuan Wang, Ph.D., Karen Fratantoni, M.D., M.P.H., Kate Detwiler, Ph.D., Yao Cheng, M.S., and Marshall Summar, M.D.

Connecting allied health professionals in pediatric nephrology

With the meeting in Washington this year, Children’s National Health System will be the local host, a distinct honor for an academic medical center that treats hundreds of nephrology patients each year, says pediatric Nephrologist Asha Moudgil, M.D., who directs Children’s kidney transplant service.

Pediatric nephrology is a relatively small specialty worldwide, encompassing just a few hundred doctors in the U.S. For each allied health field that provides collaborative care with these physicians – including nutrition, child-life, psychology and social work – the numbers of providers are even smaller. There are no national meetings for these individual subspecialty fields and no venues to meet new like-minded colleagues or learn about new research or protocols.

Six years ago, the American Society of Pediatric Nephrology (ASPN) aimed to help resolve this dilemma by launching a new multidisciplinary symposium that brings together allied health professionals of all kinds within pediatric nephrology.

Each year, the “ASPN Multidisciplinary Symposium” changes locations, allowing the meeting to target different regional groups of allied health professionals based on geography. With the meeting in Washington this year, Children’s National Health System will be the local host, a distinct honor for an academic medical center that treats hundreds of nephrology patients each year, says pediatric Nephrologist Asha Moudgil, M.D., who directs Children’s kidney transplant service.

There are multiple advantages to having the symposium in Washington, Dr. Moudgil explains. One is access to Children’s experts in this field, who have a wealth of experience in managing issues that affect patients who live in the greater Washington area. For example, the keynote address scheduled for the meeting’s opening night will be delivered by Jennifer Verbesey, M.D., Children’s surgical director of pediatric kidney transplantation, focusing on living donation in minority populations. Living kidney donors and recipients who are minorities have unique issues that can affect organ longevity, explains Dr. Moudgil, which may not be well known by all clinicians.

Children’s speakers also focus prominently in the main session on the second day, including:

  • Angela Boadu, RD, LDN/LD, a registered dietitian, and Kaushalendra Amatya, Ph.D., a psychologist, are giving a talk about nutrition and the psychosocial aspects of obesity
  • Surgeon Evan Nadler, M.D., director of Children’s Bariatric Surgery Program, is speaking about bariatric surgery before and after transplantation
  • Nurse Practitioner Christy Petyak, CPNP-PC, and Social Worker Heidi Colbert, LICSW, CCTSW, NSW-C, are leading breakout sessions about the practical aspects of immunosuppressive therapy and resources for uninsured patients
  • Amatya, the Children’s psychologist, also is leading a breakout session on internalizing psychological disorders in pediatric renal patients and
  • Registered Dietitian Kristen Sgambat, Ph.D., RD, and Dr. Moudgil are co-leading a breakout session on nutritional challenges and enteral supplementation in chronic kidney disease.

Another advantage to holding the meeting in the nation’s capital is its close proximity to government research and federal regulatory agencies, such as the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). Speakers from both agencies will be present, talking about how the FDA approves medicines for pediatric patients and offering details about the NIH’s rare disease program.

Besides the abundance of more formal knowledge-sharing, Dr. Moudgil adds, there will be plenty of opportunities for attendees to network, making connections within and outside their own respective fields.

“This is a platform for making long-term professional relationships,” Dr. Moudgil says. “Even if you’re the sole clinician representing your specialty at your own institution, you’ll be able to connect with other specialists at institutions across the country. You’re not only acquiring new information, you’re acquiring a group of colleagues you can connect with this year and those professional relationships can extend far into the future.”

little girl with concussion at doctors

Predicting kids’ outcomes after concussion

little girl with concussion at doctors

A concussion symptom measurement tool, developed by investigators at Children’s National Health System, allows other researchers to collect valuable evidence about the natural progression of symptoms and recovery for children. The tool, Post-Concussion Symptom Inventory (PCSI), was a key tool in the recent large-scale multi-center prospective study of recovery trajectory for children, which was published online in JAMA Pediatrics Sept. 4, 2018.

That study included 2,716 children between the ages of 5 and 17, and identified major trends in symptom improvement post concussion, such as:

  • Children younger than 12 experience primary symptom improvement in the first two weeks
  • Pre-adolescents, male adolescents and teens experience primary symptom improvement in the first four weeks and
  • Female adolescents take longer to perceive primary symptom improvements than children, pre-adolescents and male counterparts.

“We’ve known for many years that different people experience concussion recovery very differently. This study is the first to provide significant evidence of what we should expect to see in terms of symptom improvement for children and teens,” says Gerard Gioia, Ph.D., chief of the Division of Neuropsychology at Children’s National and director of its Safe Concussion Outcome Recovery and Education Program, who co-authored the study and whose team developed the PCSI measurement tool. “Ultimately, these findings are an important step in predicting outcomes after a concussion and developing treatment plans that get kids back to school and sports safely, when they are ready.”

Dr. Gioia and his team also recently received a Centers for Disease Control and Prevention (CDC) grant to develop a new smartphone application, Online Treatment Recovery Assistant for Concussion in Kids (OnTRACK), that applies several concussion tools developed at Children’s National, including the same one applied in the JAMA Pediatrics study, to track individual symptoms over time.

The OnTRACK app will report concussion symptoms on a regular basis (daily or weekly) and map their trajectory, so doctors can see when recovery is proceeding along the expected pathway. Alternatively, clinicians will receive an alert when a child’s recovery misses targets and warrants further investigation and possible referral to a specialist.

John Strang

Neuro- and gender-diverse teens find their voices

John Strang

“These autistic young people spoke a lot about their gender and gender needs and their descriptions of gender dysphoria were deeply emotional. One of the common characteristics of autism is reduced communication of feelings, yet many of these young people were very clear about the anguish that gender dysphoria caused for them and also their need for gender-related interventions,” says John Strang, Psy.D., director of the Gender and Autism Program at Children’s National Health System and study lead.

“They Thought It Was An Obsession” is the title of a qualitative study from the Journal of Autism and Developmental Disorders, that provides an unprecedented glimpse into the development, thoughts, perceptions, feelings and needs of this poorly understood but significant subgroup of transgender and gender minority teens.

The title is an accurate reflection of the study’s analysis, which finds that the accounts of gender dysphoria in autistic transgender youth parallel those of transgender young people without autism. These findings stand in contrast to previous studies asserting the idea that gender dysphoria in autistic youth is driven primarily by superficial autism-related interests.

“These autistic young people spoke a lot about their gender and gender needs and their descriptions of gender dysphoria were deeply emotional. One of the common characteristics of autism is reduced communication of feelings, yet many of these young people were very clear about the anguish that gender dysphoria caused for them and also their need for gender-related interventions,” says John Strang, Psy.D., director of the Gender and Autism Program at Children’s National Health System and study lead.

Additionally, the autistic characteristics of these young people – which may reduce their concern for social conventions – often lead them to express their gender in individual and sometimes surprising ways.

“A transgender autistic young woman may wear a full beard and understand her gender identity as something completely separate from her appearance,” says Dr. Strang. “The cooccurrence of gender identity-diversity and autism may reveal something of the deeper nature of gender when the overlay of social gender expectations is reduced.”

The study followed 22 autistic transgender teens over nearly two years. It is the first study of its kind to track and follow up with this many youth with the cooccurrence over a significant period of time. The authors believe the report can serve as a guide for how clinicians, peers and families can better support and understand teens who are both neurodiverse and gender diverse.

The study’s methodology is also novel, as it features the inclusion of a slate of autistic gender-diverse coanalysts and coauthors who partnered in the interpretation of the youth provided data.

The coauthor group also included a retransitioned (previously transgender) self-advocate coanalyst to help provide context regarding the experiences and trajectories of the few study participants who moved away from transgender identity during the study’s duration.

Reid Caplan of the Autistic Self-Advocacy Network, an autistic transgender self-advocate and one of the study’s coauthors noted, “Too often in medical literature, the overlap between autistic and transgender identities is described in a way that pathologizes both of these communities. As an autistic transgender young adult, I feel privileged to be a coauthor of research that puts the voices of autistic and gender-diverse youth at the forefront. By giving these youth control over their own narratives, this study exemplifies a key value of the self-advocate community: Nothing about us, without us!”

toddler on a playground

Perinatal hypoxia associated with long-term cerebellar learning deficits and Purkinje cell misfiring

toddler on a playground

The type of hypoxia that occurs with preterm birth is associated with locomotor miscoordination and long-term cerebellar learning deficits but can be partially alleviated with an off-the-shelf medicine, according to a study using a preclinical model.

Oxygen deprivation associated with preterm birth leaves telltale signs on the brains of newborns in the form of alterations to cerebellar white matter at the cellular and the physiological levels. Now, an experimental model of this chronic hypoxia reveals that those cellular alterations have behavioral consequences.

Chronic sublethal hypoxia is associated with locomotor miscoordination and long-term cerebellar learning deficits in a clinically relevant model of neonatal brain injury, according to a study led by Children’s National Health System researchers published online Aug. 13, 2018, by Nature Communications. Using high-tech optical and physiological methods that allow researchers to turn neurons on and off and an advanced behavioral tool, the research team finds that Purkinje cells fire significantly less often after injury due to perinatal hypoxia. However, an off-the-shelf medicine now used to treat epilepsy enables those specialized brain cells to regain their ability to fire, improving locomotor performance.

Step out of the car onto the pavement, hop up to the level of the curb, stride to the entrance, and climb a flight of stairs. Or, play a round of tennis. The cerebellum coordinates such locomotor performance and muscle memory, guiding people of all ages as they adapt to a changing environment.

“Most of us successfully coordinate our movements to navigate the three-dimensional spaces we encounter daily,” says Vittorio Gallo, Ph.D., Children’s Chief Research Officer and the study’s senior author. “After children start walking, they also have to learn how to navigate the environment and the spaces around them.”

These essential tasks, Gallo says, are coordinated by Purkinje cells, large neurons located in the cerebellum that are elaborately branched like interlocking tree limbs and represent the only source of output for the entire cerebellar cortex. The rate of development of the fetal cerebellum dramatically increases at a time during pregnancy that often coincides with preterm birth, which can delay or disrupt normal brain development.

“It’s almost like a short circuit. Purkinje cells play a very crucial role, and when the frequency of their firing is diminished by injury the whole output of this brain region is impaired,” Gallo says. “For a family of a child who has this type of impaired neural development, if we understand the nature of this disrupted circuitry and can better quantify it, in terms of locomotor performance, then we can develop new therapeutic approaches.”

Study authors Aaron Sathyanesan, Ph.D., Joseph Abbah, B.Pharm., Ph.D., Srikanya Kundu, Ph.D. and Vittorio Gallo, Ph.D.

The research team leveraged a fully automated, computerized apparatus that looks like a ladder placed on a flat surface, encased in glass, with a darkened box at either end. Both the hypoxic and control groups had training sessions during which they learned how to traverse the horizontal ladder, coaxed out of the darkened room by a gentle puff of air and a light cue. Challenge sessions tested their adaptive cerebellar locomotor learning skills. The pads they strode across were pressure-sensitive and analyzed individual stepping patterns to predict how long it should take each to complete the course.

During challenge sessions, obstacles were presented in the course, announced by an audible tone. If learning was normal, then the response to the tone paired with the obstacle would be a quick adjustment of movement, without breaking stride, says Aaron Sathyanesan, Ph.D., co-lead author. Experimental models exposed to perinatal hypoxia showed significant deficits in associating that tone with the obstacle.

“With the control group, we saw fewer missteps during any given trial,” Sathyanesan says. “And, when they got really comfortable, they took longer steps. With the hypoxic group, it took them longer to learn the course. They made a significantly higher number of missteps from day one. By the end of the training period, they could walk along all of the default rungs, but it took them longer to learn how to do so.”

Purkinje cells fire two different kinds of spikes. Simple spikes are a form of constant activity as rhythmic and automatic as a heartbeat. Complex spikes, by contrast, occur less frequently. Sathyanesan and co-authors say that some of the deficits that they observed were due to a reduction in the frequency of simple spiking.

Two weeks after experiencing hypoxia, the hypoxic group’s locomotor performance remained significantly worse than the control group, and delays in learning could still be seen five weeks after hypoxia.

Gamma-aminobutyric acid (GABA), a neurotransmitter, excites immature neurons before and shortly after birth but soon afterward switches to having an inhibitory effect within in the cerebellum, Sathyanesan says. The research team hypothesizes that reduced levels of excitatory GABA during early development leads to long-term motor problems. Using an off-the-shelf drug to increase GABA levels immediately after hypoxia dramatically improved locomotor performance.

“Treating experimental models with tiagabine after hypoxic injury elevates GABA levels, partially restoring Purkinje cells’ ability to fire,” Gallo says. “We now know that restoring GABA levels during this specific window of time has a beneficial effect. However, our approach was not specifically targeted to Purkinje cells. We elevated GABA everywhere in the brain. With more targeted and selective administration to Purkinje cells, we want to gauge whether tiagabine has a more powerful effect on normalizing firing frequency.”

In addition to Gallo and Sathyanesan, Children’s co-authors include Co-Lead Author, Srikanya Kundu, Ph.D., and Joseph Abbah, B.Pharm., Ph.D., both of Children’s Center for Neuroscience Research.

Research covered in this story was supported by the Intellectual and Developmental Disability Research Center under award number U54HD090257.