Behavioral Sciences

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.

little girl being examined by doctor

First Washington-based Turner syndrome clinic opens Jan. 28

little girl being examined by doctor

Endocrinologists at Children’s National work with a team of cardiologists, gynecologists, geneticists, psychologists and other clinicians to provide comprehensive and personalized care for girls with Turner syndrome.

Starting Monday, Jan. 28, 2018 girls with Turner syndrome will be able to receive comprehensive and personalized treatment at Children’s National Health System for the rare chromosomal condition that affects about one in 2,500 female births.

Many girls with Turner syndrome often work with a pediatric endocrinologist to address poor growth and delayed puberty, which may be treated with human growth hormone and estrogen replacement therapy. They may also need specialty care to screen for and treat heart defects, frequent ear infections, hearing loss, vision problems and challenges with non-verbal learning.

Roopa Kanakatti Shankar, M.D., M.S., a pediatric endocrinologist at Children’s National, aims to consolidate this treatment with a comprehensive Turner syndrome clinic.

“We’re creating a place that girls with Turner syndrome can come to receive specialized and personalized treatment, while feeling supported,” says Dr. Shankar.

Patients can now schedule visits and meet with multiple specialists in one clinic location:

The multispecialty referral team includes neuropsychologists, otolaryngologists (ear, nose and throat doctors), orthopedics, urology and dentistry to address unique medical needs. Families can also schedule appointments with audiology and get labs and other studies on the same day.

As girls with Turner syndrome age, they are at increased risk for diabetes, an underactive thyroid and osteoporosis, which is one reason Dr. Shankar wants to educate and increase awareness early on.

“There is something special about girls with Turner syndrome,” says Dr. Shankar. “They are very inspiring and endearing to work with,” she adds, reflecting on her past research and future goals with the clinic. “Their perseverance in the face of challenges is one of the things that inspires me to work in this field.”

The Turner syndrome clinic at Children’s National meets the criteria for a level 2 clinic designation by the Turner Syndrome Global Alliance by providing coordinated medical care, same-day visits with multiple specialists and connecting patients with advocacy groups.

Within the next two years, Dr. Shankar looks forward to meeting level 4 criteria, the designation for a regional resource center, by adding multi-institutional research partners, mentoring programs and organizing a patient-family advisory council.

“As we start out, we aim to provide excellent clinical care and create a database while forming these partnerships, and over time, we hope this information will influence future research studies and foster a greater depth of tailored care,” says Dr. Shankar. “Our ultimate goal is to treat, support and empower girls with Turner syndrome to achieve their full potential.”

To learn more about the Turner syndrome clinic, available on the fourth Monday of every month, visit ChildrensNational.org/endocrinology.

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.

DNA moleucle

PAC1R mutation may be linked to severity of social deficits in autism

DNA moleucle

A mutation of the gene PAC1R may be linked to the severity of social deficits experienced by kids with autism spectrum disorder (ASD), finds a study from a multi-institutional research team led by Children’s National faculty. If the pilot findings are corroborated in larger, multi-center studies, the research published online Dec. 17, 2018, in Autism Research represents the first step toward identifying a potential novel biomarker to guide interventions and better predict outcomes for children with autism.

As many as 1 in 40 children are affected by ASD. Symptoms of the disorder – such as not making eye contact, not responding to one’s name when called, an inability to follow a conversation of more than one speaker or incessantly repeating certain words or phrases – usually crop up by the time a child turns 3.

The developmental disorder is believed to be linked, in part, to disrupted circuitry within the amygdala, a brain structure integral for processing social-emotional information. This study reveals that PAC1R is expressed during key periods of brain development when the amygdala – an almond-shaped cluster of neurons – develops and matures. A properly functioning amygdala, along with brain structures like the prefrontal cortex and cerebellum, are crucial to neurotypical social-emotional processing.

“Our study suggests that an individual with autism who is carrying a mutation in PAC1R may have a greater chance of more severe social problems and disrupted functional brain connectivity with the amygdala,” says Joshua G. Corbin, Ph.D., interim director of the Center for Neuroscience Research at Children’s National Health System and the study’s co-senior author. “Our study is one important step along the pathway to developing new biomarkers for autism spectrum disorder and, hopefully, predicting patients’ outcomes.”

The research team’s insights came through investigating multiple lines of evidence:

  • They looked at gene expression in the brains of an experimental model at days 13.5 and 18.5 of fetal development and day 7 of life, dates that correspond with early, mid and late amygdala development. They confirmed that Pac1r is expressed in the experimental model at a critical time frame for brain development that coincides with the timing for altered brain trajectories with ASD.
  • They looked at gene expression in the human brain by mining publicly available genome-wide transcriptome data, plotting median PAC1R expression values for key brain regions. They found high levels of PAC1R expression at multiple ages with higher PAC1R expression in male brains during the fetal period and higher PAC1R expression in female brains during childhood and early adulthood.
  • One hundred twenty-nine patients with ASD aged 6 to 14 were recruited for behavioral assessment. Of the 48 patients who also participated in neuroimaging, 20 were able to stay awake for five minutes without too much movement as the resting state functional magnetic resonance images were captured. Children who were carriers of the high-risk genotype had higher resting-state connectivity between the amygdala and right posterior temporal gyrus. Connectivity alterations in a region of the brain involved in processing visual motion may influence how kids with ASD perceive socially meaningful information, the authors write.
  • Each child also submitted a saliva sample for DNA genotyping. Previously published research finds that a G to C single nucleotide polymorphism, a single swap in the nucleotides that make up DNA, in PAC1R is associated with higher risk for post traumatic stress disorder in girls. In this behavioral assessment, the research team found children with autism who carried the homozygous CC genotype had higher scores as measured through a validated tool, meaning they had greater social deficits than kids with the heterozygous genotype.

All told, the project is the fruit of six years of painstaking research and data collection, say the researchers. That includes banking patients’ saliva samples collected during clinical visits for future retrospective analyses to determine which genetic mutations were correlated with behavioral and functional brain deficits, Corbin adds.

Lauren Kenworthy, who directs our Center for Autism Spectrum Disorders, and I have been talking over the years about how we could bring our programs together. We homed in on this project to look at about a dozen genes to assess correlations and brought in experts from genetics and genomics at Children’s National to sequence genes of interest,” he adds. “Linking the bench to bedside is especially difficult in neuroscience. It takes a huge amount of effort and dozens of discussions, and it’s very rare. It’s an exemplar of what we strive for.”

In addition to Corbin, study co-authors include Lead Author Meredith Goodrich and Maria Jesus Herrero, post-doctoral fellow, Children’s Center for Neuroscience Research; Anna Chelsea Armour and co-Senior Author Lauren Kenworthy, Ph.D., Children’s Center for Autism Spectrum Disorders; Karuna Panchapakesan, Joseph Devaney and Susan Knoblach, Ph.D., Children’s Center for Genetic Medicine Research; Xiaozhen You and Chandan J. Vaidya, Georgetown University; and Catherine A.W. Sullivan and Abha R. Gupta, Yale School of Medicine.

Financial support for the research described in this report was provided by DC-IDDRC under awards HD040677-07 and 1U54HD090257, the Clinical and Translational Science Institute at Children’s National, The Isidore and Bertha Gudelsky Family Foundation and the National Institutes of Health under awards MH083053-01A2 and MH084961.

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.

SIOP logo

Children’s National physicians attend the International Society of Paediatric Oncology in Japan

SIOP logo

From November 16 to 19, medical professionals, clinicians, nurses and oncology patients and families from around the globe gathered for the International Society of Paediatric Oncology (SIOP) in Kyoto, Japan. Pediatric experts in their respective fields Jeffrey Dome, M.D., Ph.D., AeRang Kim, M.D., Ph.D., Steven Hardy, Ph.D., and Karun Sharma, M.D., attended SIOP representing Children’s National. The four-day scientific programme engaged those in pediatric oncology with educational lectures, keynote speakers, tailored sessions for survivors, families and support organizations, free paper sessions, specialist sessions and Meet the Expert talks.

Dr. Kim, an oncologist with the Center for Cancer and Blood Disorders and a member of the solid tumor faculty at Children’s National, presented with Dr. Sharma, director of Interventional Radiology at Children’s, on “Interventional Radiology: Technology and Opportunities” in Meet the Expert talks on both Saturday and Sunday of the programme. They discussed background information, preclinical studies, current, ongoing studies of high-intensity focused ultrasound (HIFU), HIFU in combination with heat sensitive formulated chemotherapy and future directions. In 2017, Children’s National was the first U.S. children’s hospital to successfully use MR-HIFU to treat osteoid osteoma, and is currently accruing on early phase studies evaluating HIFU ablation and HIFU in combination with lyso-thermosensitive liposomal doxorubicin for pediatric patients with refractory/recurrent solid tumors.

Dr. Hardy, a pediatric psychologist in the Center for Cancer and Blood Disorders at Children’s, presented on “Brief Psychosocial Screening to Identify Patients in Need of a Mental Health Treatment Referral in a Childhood Cancer Survivorship Clinic.” In his educational lecture, Dr. Hardy described findings that show a brief mental and behavioral health questionnaire given to patients in the Children’s National survivorship clinic is a sensitive screening tool that can identify patients in need of more formal psychosocial evaluation and treatment. He also presented data supporting the use of a lower threshold of psychological symptoms necessary to trigger discussions about mental health treatment compared to previous reports. The key implication of Dr. Hardy’s work is that survivorship clinics lacking embedded psychology support could adopt this questionnaire, which is publically available and translated into 86 languages, to help identify survivors with mental and behavioral health concerns and ensure appropriate referrals are made.

Dr. Dome, Vice President of the Center for Cancer and Blood Disorders, served on the SIOP Scientific Programme Advisory Committee, which selected the topics for presentation.

SIOP provides an international forum for the sharing of new research and ideas related to pediatric oncology. The annual conference furthers the efforts made towards developing new treatments and cures and opens the conversation, encouraging innovation and collaboration with experts from around the world. Children’s National has taken part in SIOP for many years, most recently hosting the meeting in Washington, D.C., in 2017.

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.

Maureen E Lyon

Maureen E. Lyon, Ph.D., ABPP, lauded for outstanding excellence in patient-centered advance care planning

Maureen E Lyon

Maureen E. Lyon, Ph.D., a principal investigator at Children’s Center for Translational Science, will be honored with a “Recognition Award for Excellence and Innovation in Research” by Respecting Choices for outstanding excellence in patient-centered advance care planning and shared decision-making.

Respecting Choices will present the award on Oct. 26, 2018, during its “National Share the Experience Conference” in Bloomington, Minnesota.

Lyon’s expertise is in advance care planning and shared decision-making for children and adolescents with life-threatening illnesses and their families, a field that has transformed in recent decades in order to pave better paths forward for difficult but necessary conversations.

“It came from my clinical experience,” Lyon says. “In the early days of the human immunodeficiency virus (HIV) epidemic in the U.S., everything, absolutely everything, was done to keep the kids alive in the hopes that some new drug would come around the corner, and we could bring them back from the brink. I remember one of the young boys saying to his case manager that he didn’t want all of these interventions. But he hadn’t told his family.”

That young man’s eye-opening comments – and learning that Children’s National Health System had a policy that teenagers were to be included in conversations about their own advance care planning – inspired Lyon to conduct a series of surveys involving adolescents, families and clinicians.

“I remember sitting down with friends and saying ‘There must be a better way to do this. Everyone is afraid to broach the subject,’ ” Lyon recalls. So, she conducted surveys of all healthy kids coming through Children’s adolescent clinic and kids diagnosed with HIV, cancer and sickle cell disease.

“It turned out the kids did want to talk about it. That was the first thing. Families told us they wanted help breaking the ice. Physicians felt it wasn’t their role – many doctors felt their role was to save people – or, they didn’t have the training,” she says.

Through a series of focus groups with youths living with HIV, families and community members, Lyon adapted the adult-centric Respecting Choices model to create a three-session intervention to better meet the advance care planning needs of youths and adolescents living with HIV.

Lyon’s recent work includes a single-blinded, randomized study published Oct. 19, 2018, in Pediatrics that finds the more families understand the end-of-life treatment preferences expressed by adolescents living with HIV, the less likely these youth are to suffer HIV-related symptoms, compared with youths whose families do not understand their end-of-life care goals.

She also has adapted the Respecting Choices intervention to facilitate its use with children diagnosed with cancer. More recently, she has adapted the model for use by parents of children with rare diseases who cannot communicate on their own.

“For the other life-threatening health conditions, we worked to support adolescents in expressing their advance care planning choices in their own voices. With rare diseases, we’re shifting gears,” she adds.

Published research indicates a sizable proportion of pediatric patients who die in hospitals now have confirmed or suspected rare diseases, she says. During a pilot involving seven families, many parents multitasked during the conversations, taking pauses to attend to various alarms as they sounded, to complete regular feedings and to contend with their child’s petit mal seizures.

“The level of burden of taking care of these children with terminal illnesses was pretty overwhelming,” she says. “Still, families were not too burdened to participate in advance care planning, but first wanted to identify their priority palliative care needs and to develop a support plan to meet those needs. We also had more fathers involved.”

Shayna Coburn

Shayna Coburn, Ph.D., receives APA Achievement Award for Early Career Psychologists

Shayna Coburn

Shayna Coburn, Ph.D assistant professor and psychologist at Children’s National Health System.

Shayna Coburn, Ph.D., assistant professor and psychologist at Children’s National Health System, has been awarded an American Psychological Association (APA) Achievement Award for Early Career Psychologists.

APA’s Committee on Early Career Psychologists announced the award for early career members who work in all areas of psychology (education, practice, public interest and science) to attend the APA Annual Convention August 2018 in San Francisco.

“At this early stage in my career, the recognition of my achievements thus far is highly valuable as I expand my body of work and strive to advance my career,” Coburn says.

The awards program was designed to reduce barriers to early career members’ attending APA conventions and to support their ability to make meaningful connections and engage in professional development. As a recipient of the award, Coburn received reimbursement up to $400 for convention-related expenses that could cover travel, lodging, meals and/or convention registration fees.

Throughout her career, Coburn has been passionate about clinical and research excellence as well as advocacy. In her current position in the celiac disease program, she has been involved with establishing a new psychosocial health program that combines multidisciplinary clinical service, research and community outreach.

During a previous APA convention, Coburn was able to attend as an exhibitor to promote a free continuing education program. This year was the first time she was featured as a presenter, speaking about celiac disease and psychosocial challenges associated with the disease.

Coburn presented data from Children’s National celiac disease multidisciplinary clinic to report the incidence rates of symptoms that patients experience such as anxiety, depression and stress from a gluten-free diet.

“The most important aspect of the award was having the largest organization of psychologists recognize that during the early stages of my career, I have been involved in work that is meaningful to the community,” Coburn says. “It’s always helpful to have extra support to attend a conference that is across the country from my home in Maryland,” she adds.

The leader and collaborator in a range of scientific, clinical and community-based activities thanks the award for being invaluable in facilitating her attending the conference and being able to participate in career-building and networking opportunities that will help enable her to build professional relationships nationwide.

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.

Vittorio Gallo

Vittorio Gallo, Ph.D., honored with Senator Jacob Javits Award in the Neurosciences

Vittorio Gallo

Vittorio Gallo, Ph.D., Children’s Chief Research Officer, has been awarded a prestigious Senator Jacob Javits Award in the Neurosciences, which extends federal funding for Gallo’s lab for at least seven years. The long-term support is offered to “investigators with a history of exceptional talent, imagination and preeminent scientific achievement.”

Only National Institute of Neurological Disorders and Stroke (NINDS) staff members or NINDS Council members may nominate researchers for the coveted awards, named in honor of Sen. Jacob Javits, (R-New York). Before his death, Sen. Javits advocated for additional research in a wide variety of disorders of the brain and nervous system.

“It’s a great recognition from the neuroscience community and from NINDS for contributions to neuroscience and outstanding service to the neuroscience community,” Gallo says. “It’s also very exciting because it gives additional national visibility to our Center for Neuroscience Research and to Children’s National Health System, as one of the nation’s leading research institutions.”

Through the award, Gallo’s successful five-year Research Project Grant from the National Institutes of Health will be converted to a seven-year award. In the fourth year of federal funding, he can apply for a budgetary increase.

“Thanks to this funding, I predict we will be able to identify cellular and molecular mechanisms that underlie developmental delays in children who experienced neonatal brain injury,” Gallo says.

“We are really starting to understand this very complex problem: How does neonatal brain injury lead to developmental delays later in a child’s life? What are the mechanisms? We know there are cognitive and behavioral abnormalities that are common to children who have experienced hypoxia as newborns. But we don’t really know how these behavioral abnormalities arise at the physiological, cellular and molecular levels.”

Gallo says identifying these cellular targets will make it possible to tailor interventions that target distinct cell types at different times in the child’s life.

Recent work by Gallo’s lab includes a research paper published online Aug. 13, 2018, by Nature Communications that found chronic sublethal hypoxia is associated with locomotor miscoordination and long-term cerebellar learning deficits in a clinically relevant model of neonatal brain injury.

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!”