Behavioral Health

stressed pregnant mom

Pandemic stress reshapes the placentas of expectant moms

stressed pregnant mom

Elevated maternal stress during the COVID-19 pandemic changed the structure, texture and other qualities of the placenta in pregnant mothers.

Elevated maternal stress during the COVID-19 pandemic changed the structure, texture and other qualities of the placenta in pregnant mothers – a critical connection between mothers and their unborn babies – according to new research from the Developing Brain Institute at Children’s National Hospital.

Published in Scientific Reports, the findings spotlight the underappreciated link between the mental health of pregnant mothers and the health of the placenta – a critical organ that develops during pregnancy to nourish and protect babies. The long-term neurodevelopmental impact on their children is under investigation.

“During the pandemic, mothers were exposed to a litany of negative stressors including social distancing, fear of dying, financial insecurity and more,” said Catherine Limperopoulos, Ph.D., chief and director of the Developing Brain Institute, which led the research. “We now know that this vital organ was changed for many mothers, and it’s essential that we continue to investigate the impact this may have had on children who were born during this global public health crisis.”

The big picture

Dr. Limperopoulos’s team compared magnetic resonance imaging (MRI) of 165 women who were pregnant before March 2020 to 63 women who became pregnant during the pandemic. Those pregnant during the pandemic were not knowingly exposed to COVID-19, and they collectively scored significantly higher on questionnaires measuring stress and depression. They were recruited at Children’s National as part of a clinical trial aimed at reducing pregnant women’s elevated stress levels during the pandemic.

The placenta is a temporary organ that grows during pregnancy to provide oxygen, nutrients and immunological protection to babies, and its health is vital to the well-being of the developing fetus. The data showed key changes in how the placenta grew and developed among women pregnant during the pandemic, especially when compared to placental growth and development among women who were pregnant before the pandemic. Changes in placental development also were associated with the infant’s birth weight at delivery. Importantly, these changes seem to be connected to maternal stress and depression symptoms.

Taken as a whole, the findings suggest that the disturbances measured on placental development in the womb may influence the placenta’s ability to support fetal health and wellness. “We are continuing to follow up on these mother-baby dyads to determine the long-term functional significance of these placental changes in utero,” Dr. Limperopoulos said.

Studies have shown that the placenta adapts to negative changes in the maternal environment and mental health status, and disruptions in placental function impact infant brain development and children’s neurobehavior and temperament.

The patient benefit

Dr. Limperopoulos’s research studying childbirth amid the pandemic builds on her extensive work investigating the impact of maternal stress on unborn children, including its adverse effect on brain structure and biochemistry. She’s also working on treatments and interventions to better support new families. Her program, DC Mother-Baby Wellness, brings together community partners to provide wrap-around care to expectant and new moms with elevated scores for stress, anxiety and depression.

“When identified early, maternal stress is a modifiable risk factor that can be treated with psychotherapy, social support and other personalized, evidence-based interventions,” Dr. Limperopoulos said. “We look forward to continued research in this area to better understand the mechanisms behind these biological changes and the needs of mothers and children who are born during pandemics, natural disasters and other significantly stressful events.”

Drs. Wells and Kenworthy

Center for Neuroscience and Behavioral Medicine announces new leaders

Drs. Wells and Kenworthy

Elizabeth M. Wells, M.D., M. H. S., was named Senior Vice President of the Center for Neuroscience and Behavioral Medicine, and Lauren Kenworthy, Ph.D., was named division chief of Neuropsychology.

The Center for Neuroscience and Behavioral Medicine at Children’s National Hospital recently announced the appointment of two new leaders. Elizabeth M. Wells, M.D., M. H. S., was named Senior Vice President of the Center for Neuroscience and Behavioral Medicine, and Lauren Kenworthy, Ph.D., was named division chief of Neuropsychology.

Dr. Wells obtained her undergraduate degree in psychology and biology at Harvard University and her medical degree at the George Washington University School of Medicine and Health Sciences. She was an Intramural Research Training Award fellow at the National Institute of Mental Health and holds a master’s in Health Science from the NIH/Duke Clinical Research Training Program. She completed pediatrics and neurology training at Children’s National and joined the faculty in the Brain Tumor Institute in 2011.

Dr. Wells has led the Children’s National Inpatient Neurology program and developed the hospital’s multidisciplinary Neuro-immunology program into a destination program for unsolved neuroinflammatory diseases. She serves on numerous national and international associations and working groups and is a member of the scientific selection committee for the Child Neurology Society.

Dr. Wells has served in leadership roles for the Clinical and Translational Science Institute at Children’s National and the District of Columbia Intellectual and Developmental Disabilities Research Center. She is principal investigator for a 10-year translational research study within the Children’s National partnership with the National Institute of Allergy and Infectious Diseases and was the Children’s National Hospital Medical Staff President from 2020-2022.

Dr. Kenworthy received a B.A. from Yale University and Ph.D. from the University of Maryland. She completed her internship and residency training in clinical psychology/pediatric neuropsychology at Harvard Medical School, Children’s Hospital Boston, Johns Hopkins Medical School and Mount Washington Pediatric Hospital. She has been on the faculty at Children’s National and GW since 1995. She is a national leader in autism research, as well as a distinguished author and speaker.

Gender Self-Report seeks to capture the gender spectrum for broad research applications

form with check boxes for genderA new validated self-report tool called the Gender Self-Report provides researchers a way to characterize the gender of research participants beyond their binary designated sex at birth.

The multi-dimensional Gender Self-Report, developed using a community-driven approach and then scientifically validated, is outlined in a peer-reviewed article in the American Psychologist, a journal of the American Psychological Association.

The big picture

“This is the first broadly validated tool that allows us to measure inner gender experience across a large group of people in a rigorous way that doesn’t require a person to understand specialized gender-related terms,” says John Strang, Psy.D., who directs the Gender and Autism Program at Children’s National Hospital. He co-authored the journal article about the measure and co-led the initiative to develop it. “Typical gender assessments are fixed check boxes, which is problematic for capturing gender in people who are not familiar with many of the self-descriptors, which vary in their use and meaning.”

Strang notes that even open-field gender assessments can be problematic for people who experience gender diversity but are not aware of nuanced gender-related language.

Why it matters

This new gender characterization and inclusion method will allow researchers from a broad array of fields (e.g., social sciences, medicine, education) to model their participants’ inner gender experience more equitably in research. The resulting studies will be able to provide deeper understanding of how a person’s gender can play a role in study outcomes.

Senior author and statistical lead for the project, Ji Seung Yang, Ph.D., from University of Maryland Department of Human Development and Quantitative Methodology, foresees this tool as an important addition to the research toolkit for people studying neuroimaging, genetics and any other research that requires a more accurate and detailed picture of an individual’s gender experience.

What’s unique

The Gender Self-Report tool is the first of its kind to be developed and validated by researchers together with the gender diverse and neurodiverse communities directly. These efforts align with work in many fields of clinical research to ensure that study findings reflect the insights and experiences of the people who are being studied, rather than simply capturing the researcher’s external perspective of those participants.

The tool is appropriate for use by youth (as young as 10 years of age) and adults, gender diverse and cisgender individuals, and non-autistic and autistic people. The focus on inclusivity for autistic people is in keeping with the common intersection of autism and gender diversity (i.e., 11% of gender-diverse people are estimated to be autistic).

Gregory Wallace, Ph.D., co-author of the measure and associate professor in the Department of Speech, Language & Hearing Sciences at The George Washington University, calls the tool a “game changer for any research that needs to understand specifics about how gender experience can impact health-related or developmental differences.”

The Gender Self-Report: A Multidimensional Gender Characterization Tool for Gender-Diverse and Cisgender Youth and Adults, appears in the American Psychologist.

Bear Institute PACK logo

Bear Institute Pediatric Accelerator Challenge for Kids winners announced

Bear Institute PACK logoIn December 2022, the Bear Institute, along with Children’s National Hospital and Oracle Health, hosted the second annual Bear Institute PACK (Pediatric Accelerator Challenge for Kids), a start-up competition aimed to foster pediatric digital health innovation.

Bear Institute PACK is inclusive of the entire pediatric health care community and addresses the large disparity in digital health innovation funding dedicated to children versus the rest of the population. “We have to do more for children, a population that can’t advocate for itself,” says Matt Macvey, M.B.A., MS, executive vice president and chief information officer at Children’s National Hospital. “Bear Institute PACK is an all-hands effort to provide increased support to those start-ups trying to bring new solutions to market for kids.”

Start-ups share their innovations and receive valuable feedback from expert judges while competing for a chance to win an on-site pilot and software development support. The competition features three rounds of judging: an initial review of applications from the Bear Institute PACK team, judging from participating pediatric healthcare providers and administrators and review from an expert panel of judges during finalist start-ups’ live pitches. This year’s start-up participants competed across four innovation tracks in the following areas of development: Early-Stage Innovation, Concept Validation, Early Commercialization and Growth Trajectory.

This 2022 winners, in four innovation tracks, are:

  • Early-Stage Innovation (“Even the biggest ideas start small”) Winner: PigPug Health
    Its solution uses neurofeedback, a non-invasive approach to treating brain-related conditions, and artificial intelligence to help children with ADHD and autism become more socialized.
  • Concept Validation (“Now it’s time to test it”) Winner: Global Continence, Inc.
    Its Soluu™, Bedwetting Mitigation Device, helps rapidly and permanently mitigate bedwetting with a neuromodulation process.
  • Early Commercialization (“Countdown to launch”) Winner: PyrAmes Inc.
    Its solution Boppli™ provides continuous, non-invasive blood pressure monitoring and streams data via Bluetooth to a mobile device.
  • Growth Trajectory (“The investment is growing”) Winner: maro
    Its full stack child development kit equips a child’s caretakers (at home, school and clinic) with easy access to tools and data needed to help them navigate tough conversations including mental health, diversity, empathy, and puberty and helps identify mental health at-risk students in schools.

“I was very impressed with this year’s start-up participants and their caliber of talent and passion for what they do. The finalist judges were tasked with selecting one winner in each innovation track, but the work each participant is doing for kids makes them all winners,” says Rebecca Laborde, Ph.D., chief scientist, vice president of Health Innovation and Scientific Advisory, Oracle Health. “Thank you to the entire pediatric healthcare community that comes together to help make this event a success. We believe that by bringing together like-minded individuals with the same goals, we can make a real difference in pediatric healthcare.”

More information on this year’s winners can be found on the Bear Institute PACK website.

Abstract Happy 2022 New Year greeting card with light bulb

The best of 2022 from Innovation District

Abstract Happy 2022 New Year greeting card with light bulbA clinical trial testing a new drug to increase growth in children with short stature. The first ever high-intensity focused ultrasound procedure on a pediatric patient with neurofibromatosis. A low dose gene therapy vector that restores the ability of injured muscle fibers to repair. These were among the most popular articles we published on Innovation District in 2022. Read on for our full top 10 list.

1. Vosoritide shows promise for children with certain genetic growth disorders

Preliminary results from a phase II clinical trial at Children’s National Hospital showed that a new drug, vosoritide, can increase growth in children with certain growth disorders. This was the first clinical trial in the world testing vosoritide in children with certain genetic causes of short stature.
(2 min. read)

2. Children’s National uses HIFU to perform first ever non-invasive brain tumor procedure

Children’s National Hospital successfully performed the first ever high-intensity focused ultrasound (HIFU) non-invasive procedure on a pediatric patient with neurofibromatosis. This was the youngest patient to undergo HIFU treatment in the world.
(3 min. read)

3. Gene therapy offers potential long-term treatment for limb-girdle muscular dystrophy 2B

Using a single injection of a low dose gene therapy vector, researchers at Children’s National restored the ability of injured muscle fibers to repair in a way that reduced muscle degeneration and enhanced the functioning of the diseased muscle.
(3 min. read)

4. Catherine Bollard, M.D., M.B.Ch.B., selected to lead global Cancer Grand Challenges team

A world-class team of researchers co-led by Catherine Bollard, M.D., M.B.Ch.B., director of the Center for Cancer and Immunology Research at Children’s National, was selected to receive a $25m Cancer Grand Challenges award to tackle solid tumors in children.
(4 min. read)

5. New telehealth command center redefines hospital care

Children’s National opened a new telehealth command center that uses cutting-edge technology to keep continuous watch over children with critical heart disease. The center offers improved collaborative communication to better help predict and prevent major events, like cardiac arrest.
(2 min. read)

6. Monika Goyal, M.D., recognized as the first endowed chair of Women in Science and Health

Children’s National named Monika Goyal, M.D., M.S.C.E., associate chief of Emergency Medicine, as the first endowed chair of Women in Science and Health (WISH) for her outstanding contributions in biomedical research.
(2 min. read)

7. Brain tumor team performs first ever LIFU procedure on pediatric DIPG patient

A team at Children’s National performed the first treatment with sonodynamic therapy utilizing low intensity focused ultrasound (LIFU) and 5-aminolevulinic acid (5-ALA) medication on a pediatric patient. The treatment was done noninvasively through an intact skull.
(3 min. read)

8. COVID-19’s impact on pregnant women and their babies

In an editorial, Roberta L. DeBiasi, M.D., M.S., provided a comprehensive review of what is known about the harmful effects of SARS-CoV-2 infection in pregnant women themselves, the effects on their newborns, the negative impact on the placenta and what still is unknown amid the rapidly evolving field.
(2 min. read)

9. Staged surgical hybrid strategy changes outcome for baby born with HLHS

Doctors at Children’s National used a staged, hybrid cardiac surgical strategy to care for a patient who was born with hypoplastic left heart syndrome (HLHS) at 28-weeks-old. Hybrid heart procedures blend traditional surgery and a minimally invasive interventional, or catheter-based, procedure.
(4 min. read)

10. 2022: Pediatric colorectal and pelvic reconstructive surgery today

In a review article in Seminars in Pediatric Surgery, Marc Levitt, M.D., chief of the Division of Colorectal and Pelvic Reconstruction at Children’s National, discussed the history of pediatric colorectal and pelvic reconstructive surgery and described the key advances that have improved patients’ lives.
(11 min. read)

Young girl with paints

Autism Center of Excellence finds tools to avoid late diagnosis of women, others

Young girl with paints

Longitudinal data shows that girls and women are the most likely to be misdiagnosed or missed using traditional methods of assessment for autism.

The National Institute of Mental Health awarded $12.5 million to three institutions, including Children’s National Hospital, to become an Autism Center of Excellence. The goal of the research is to help autistic adolescents and adults receive timely and appropriate services and supports to improve overall outcomes. It is co-led by Lauren Kenworthy, Ph.D., at the Center for Autism Spectrum Disorders at Children’s National, Kevin Pelphrey, Ph.D., at the University of Virginia, and Allison Jack, Ph.D., from George Mason University,

The research will focus on developing screeners to identify people for autism assessment who traditionally have a high risk of a late or missed diagnosis.

Why it matters

Late or missed diagnosis puts people with autism spectrum disorder at greater risk for depression, anxiety and self-harm. It can also prevent access to supports through schools or other community organizations. Some people are misdiagnosed with other mental health conditions such as bipolar or borderline personality disorder leading to inappropriate treatments.

Longitudinal data shows that girls and women are the most likely to be misdiagnosed or missed using traditional methods of assessment for autism.

The hold-up in the field

There are two big reasons why truly autistic people fail to be identified. First, previous work to understand and diagnose autistic people was done based on data from mostly white, young, male participants. The tools do a very good job identifying autism that presents similarly to those study participants.

Kenworthy says the research community took a very long time (too long, perhaps) to recognize that many people with autism have a wide range of experiences both positive and negative that can inform diagnosis.

This relates to the second big hold-up in the field: that researchers have also been slow to recognize the importance of listening to the experiences of autistic people. Dr. Kenworthy says that for years, clinicians have known that diagnosing anxiety means asking the person how they feel inside. That same approach was rarely used with autistic people. “We need to listen to the people who are experiencing this or we are going to miss a lot,” she points out.

What’s next

The new Autism Center of Excellence has three main aims for the 5 years of funding.

  • Collect large amounts of behavioral and cognitive phenotyping data
  • Conduct qualitative interviews with autistic people using those data
  • Validate the development of the Self-Assessment of Autistic Traits — a tool that seeks to do a better job accelerating identification of people who need to be assessed for autism spectrum disorders but don’t necessarily meet the criteria of the current screeners.

Children’s National leads the way

This collaboration continues previous work the Center for Autism Spectrum Disorders has done with neuroimagers including Pelphrey and Jack to understand how autism and autism interventions affect the brain and builds on it by adding the experience of researchers from the autistic community.

The neuroimaging teams will use technology such as functional magnetic resonance imaging (fMRI), data analysis and genetic tools to find biomarkers and phenotypes that reflect what is learned from people with autism who experienced a missed or late diagnosis.

The end result will be a validated tool developed with people who experience autism, that gives people with autism, clinicians and researchers a unique new tool for identifying autistic strengths and challenges.

Kenworthy says it’s the two pieces coming together that will be the game-changer. “The technology, the biomarkers and phenotypes are really important, but aren’t meaningful until we understand how that maps onto the lived experience of autism.”

Depressed mom sitting on couch with infant

Improving post-partum depression screening in the NICU and ED

Depressed mom sitting on couch with infant

A universal screening program is a critical first step for hospitals caring for postpartum caregivers, both inpatient and outpatient.

Perinatal Mood and Anxiety Disorders (PMADs) — particularly postpartum depression — are more prevalent among parents who have newborns admitted to a Neonatal Intensive Care Unit (NICU). Children’s National Hospital sought to increase the number of parents screened for PMADs in the NICU and Emergency Department (ED), where there was a high incidence of people seeking care. The team found that a universal screening program is a critical first step for hospitals caring for postpartum caregivers, both inpatient and outpatient.

The big picture

Without treatment, PMADs affect the caregiver and disturb their interaction with their infant, impacting the child’s cognitive and emotional development.

“What surprised us was how many people we saw that screen positive for postpartum depression and anxiety disorders. The percentage of our population is higher than what is reported in the literature,” said Sofia Perazzo, M.D., program lead at Children’s National.

What we did

The team initiated a multifaceted approach, using an electronic version of the Edinburgh Postpartum Depression Screening tool.

  • A part-time family services support staff was hired to screen caregivers. Funding later expanded the team to cover more days and hours.
  • Real-time social work interventions and linkage to resources were provided to all caregivers.
  • A part-time psychologist was hired to provide telemedicine therapy to NICU parents.
  • Remote screening was implemented for those who could not be screened in-person.

In the NICU, 1,596 parents were approached from August 2018-April 2022. Of those approached, 90% completed the screen, 26% screened positive, 4% indicated having suicidal thoughts and about 13% of caregivers were fathers.

What we learned

  • Action plans need to be in place for positive screens at start.
  • Electronic tools can aid significantly in expanding screening.
  • Trained personnel and multidisciplinary approaches are key.
  • Screening in two different settings can be challenging as they present different systems.
  • Being flexible and adapting tools and the system are key to success.
  • Good team communication with the nurse is vital.

“We’re working on improving our screening system to make it more efficient. We also realized that we need to make more resources available to these families,” said Dr. Perazzo. “Our team is constantly looking for community resources that can help them along the way. There is also a big need to educate our families on mental health issues, so we use this encounter as an opportunity to do that as well.”

This work was made possible by an investment from A. James & Alice B. Clark Foundation to Children’s National that aims to provide families with greater access to mental health care and community resources. Read more about the work of the Perinatal Mental Health Task Force at Children’s National.

girl monitoring blood sugar

Continuous glucose monitoring use patterns in young children after T1D diagnosis

girl monitoring blood sugar

Continuous glucose monitoring (CGM) is a blood glucose monitoring device worn on the body that is linked to positive glycemic outcomes in people with Type 1 diabetes

Continuous glucose monitoring (CGM) is a blood glucose monitoring device worn on the body that is linked to positive glycemic outcomes in people with Type 1 diabetes (T1D). However, very little research has examined CGM use and glycemic outcomes in young children, particularly those newly diagnosed with T1D.

A new Diabetes Technology and Therapeutics study led by Randi Streisand, Ph.D., C.D.C.E.S., Chief of Psychology and Behavioral Health at Children’s National Hospital, and others identified four meaningful trajectories of CGM use among young children across 18-months post-T1D diagnosis: those who “always” used CGM; those who got on CGM later but stayed on it (“late/stable”); those who used CGM inconsistently; and those who “never” used CGM. The investigators conducted a study of 157 parents of young children (1-6 years) newly diagnosed with T1D who enrolled in a behavioral intervention.

Importantly, the authors found that those with private insurance were more likely than those with only public insurance to be in the “always” and “late/stable” groups (as opposed to the “never” group). Those in the “always” and “late/stable” groups also had better glycemic outcomes than those in the “never group” at 18-months post-T1D diagnosis.

“This research highlights that insurance type can be a barrier to accessing CGM,” Dr. Streisand noted. “Further, this is one of the first studies, among newly diagnosed young children, to show that CGM initiation at diagnosis or near diagnosis followed by sustained use is associated with better glycemic outcomes compared to never initiating CGM, supporting findings from other studies conducted with older youth.”

The findings inform clinical care with patients as it suggests that, when clinically appropriate, CGM initiation near or at the time of diagnosis benefits glycemic outcomes in young children when followed by sustained use. This is the only study to examine patterns of CGM use among 1-6-year-old children newly diagnosed with T1D over the first 18-months post-diagnosis.

“It was exciting to find differences in glycemic outcomes based on CGM initiation and use in this unique population,” Dr. Streisand said. However, the authors concluded that, given the health benefits of CGM, further exploration of barriers to CGM access and use among some families is needed.

In addition to Dr. Streisand, other Children’s National co-authors include Carrie Tully, Ph.D.;  Maureen Monaghan, Ph.D., C.D.E., and Christine Wang, Ph.D.

Lee Beers and Catherine Limperopoulos

Lee Beers, M.D., and Catherine Limperopoulos, Ph.D., named A. James & Alice B. Clark Distinguished Professors

Lee Beers and Catherine Limperopoulos

Lee Beers, M.D., and Catherine Limperopoulos, Ph.D., have been named A. James & Alice B. Clark Distinguished Professors by Children’s National Hospital.

Children’s National Hospital named Lee Savio Beers, M.D., as the A. James & Alice B. Clark Distinguished Professor of Early Childhood Intervention and Advocacy. She serves as the medical director for Community Health and Advocacy at Children’s National.

Children’s National Hospital also named Catherine Limperopoulos, Ph.D., as the A. James & Alice B. Clark Distinguished Professor of Maternal-Infant Health. She serves as chief and director of the Developing Brain Institute and director of Research for the Prenatal Pediatrics Institute at Children’s National.

About the award

Drs. Beers and Limperopoulos join a distinguished group of 42 Children’s National physicians and scientists who hold an endowed chair. Professorships support groundbreaking work on behalf of children and their families. They foster new discoveries and innovations in pediatric medicine. These appointments carry prestige and honor that reflect each recipient’s achievements and a donor’s forethought to advance and sustain knowledge.

Dr. Beers has spent her life dedicated to bringing together the diverse voices of pediatricians, children and families to improve the health of all children. She previously served as the 2021 president of the American Academy of Pediatrics. She currently oversees the Child Health Advocacy Institute’s Community Mental Health CORE (Collaboration, Outreach, Research and Equity). It includes initiatives such as the Early Childhood Innovation Network and serves as a catalyst to elevate the standard of mental health care for every young person in Washington, D.C. Dr. Beers’ clinical and research interests include the integration of mental health and pediatric primary care, the impact of adversity and stress on child well-being and advocacy education.

Dr. Limperopoulos is at the forefront of clinical research and translational efforts focused on accelerating screening, diagnosing, treating and preventing prenatal onset brain disorders to improve child health and well-being for life. Her research seeks to understand the impact of an adverse intra- and extra-uterine environment on the developing brain and its long-term neurodevelopmental repercussions. She is founder and director of the District of Columbia Perinatal Consortium. It brings together regional stakeholders in obstetrics, psychiatry, pediatrics and the community to determine the optimal delivery of screening and low-cost interventions aimed at reducing health disparities experienced by women in under-resourced Washington, D.C., communities.

Drs. Beers and Limperopoulos are champions in their respective and rapidly growing fields. Together, they are blazing new trails for young children and their families. Their important work through the Clark Parent & Child Network is improving the lives of children in our community today while advancing knowledge to inspire the next generation of leaders.

The A. James & Alice B. Clark Foundation, through their vision and generosity, are ensuring that

Drs. Beers and Limperopoulos and future holders of these distinguished professorships will launch bold, new initiatives to rapidly advance the fields of early childhood development and maternal-infant health, elevate the hospital’s leadership and improve the lifetimes of young children.

About the donors

The Clark Foundation supports the work of organizations with strong leadership and values that reflect those of its founder, A. James Clark. Its mission is to ensure that these organizations have the resources they need to grow and support their communities today and in the future. Mr. Clark founded Clark Construction Group, which transformed the landscape of Washington, D.C., with its many projects, including Children’s National Hospital’s main campus. Mr. Clark was dedicated to giving back to the communities where he lived and worked. This includes longstanding support for Children’s National through strategic investments in genetic medicine, early childhood development, family resiliency and child mental health.

“The A. James & Alice B. Clark Foundation’s investments at Children’s National have created the foundation of one of the most significant philanthropic partnerships in our hospital’s history. Its most recent investment in the Clark Parent & Child Network, led by Drs. Beers and Limperopoulos, gives young families in Washington, D.C., greater access to vital mental health care and community resources. The Network is advancing our mission to build a healthy foundation for all kids so they can grow up stronger. The two new Clark Distinguished Professorships held by Drs. Beers and Limperopoulos will advance this vital work far into the future. We are proud to carry forward the legacy of Mr. Clark and the Clark family through these distinguished chairs.” –Kurt Newman, M.D., President & CEO, Children’s National Hospital

father and son in playground

Using psychological treatments to help pediatric pain management

father and son in playground

Behavioral pain management can utilize approaches to address the experience of co-occurring acute and chronic pain.

There are different types of pain that people experience, such as short-term (acute) pain and longer term (chronic or persistent) pain. Just like there are different pharmacologic treatments depending on the type of pain, there are different psychological or behavioral therapies that seem more effective when tailored to a person’s type of pain. Furthermore, certain psychological treatments that are known to be helpful for managing acute pain may actually be unhelpful for a child dealing with chronic pain. A framework has not previously existed for the provision of psychological treatment when children are experiencing both acute and chronic pain.

In a new article, Megan Connolly, Ph.D., pediatric psychologist, and Steven Hardy, Ph.D., pediatric psychologist and director of Psychology and Patient Care Services for the Center for Cancer and Blood Disorders, both at Children’s National Hospital, outline recommendations for the psychological treatment of acute and chronic pain in children.

The hold-up in the field

Only recently have psychological therapies gained empirical support for their efficacy in treating pain conditions. Very little research, however, has been done on how to effectively tailor psychological treatments for groups experiencing both acute and chronic pain, likely because the pain conditions that involve both acute and chronic pain are rare.

In their new article, Dr. Connolly and Dr. Hardy draw attention to this issue by pulling together empirical evidence and clinical expertise to outline a framework for the psychological and behavioral management of co-occurring acute and chronic pain in children.

“This framework will help to guide the development of novel clinical interventions for individuals who experience co-occurring acute and chronic pain,” Dr. Connolly said.

Why we’re excited

The authors reviewed how behavioral pain management strategies can utilize complementary approaches to address the experience of co-occurring acute and chronic pain.

“It’s challenging that there are not many psychological treatments that were developed with the populations we see in mind,” Dr. Connolly added. “And it’s exciting there is now a more coherent framework for treating patients that have acute and chronic pain.”

Children’s National Hospital leads the way

Many clinicians see the unique challenges of treating co-occurring acute and chronic pain. However, this is the first article to propose a clinical framework for the psychological treatment of patients experiencing both types of pain.

The authors said they hope that their article helps to enhance the current dialogue around pain perception and pain burden to address the needs of co-occurring acute and chronic pain presentations.

You can read the full study, Clinical Considerations for Behavioral Pain Management in Co-occurring Acute and Chronic Pain Presentations, in the journal Clinical Practice in Pediatric Psychology.

family with child in wheelchair

The psychosocial needs of children with rare diseases

family with child in wheelchairA special issue of the journal Children, guest-edited by Maureen Lyon, Ph.D., clinical health psychologist at Children’s National Hospital, features a compilation of articles from a diverse group of professionals. The authors share their expertise on topics related to psychosocial considerations for children and adolescents living with rare diseases.

Co-edited by Lori Wiener, Ph.D., of the National Cancer Institute, the special issue contains articles addressing the psychosocial, neuropsychological and educational needs these children face as well as the impact on their family, friends and community.

According to Lyon and Wiener, “Living with a long-term medical condition, particularly if it is a rare disease, can have a profound impact on the lives of children and their caregivers. Our goal is to update readers on evolving research in the field and familiarize them with useful clinical knowledge and interventions.”

The issue contains 13 peer-reviewed manuscripts from around the globe, including Asia (Taiwan), Australia, Europe (Germany, Italy, Sweden, and Netherlands) and the United States. The following were authored by experts from Children’s National:

Read the full issue of Psychosocial Considerations for Children and Adolescents Living with Rare Diseases.

Paper cutouts of silhouette

Successful autism and ADHD tools go digital

Paper cutouts of silhouette

A team is working to implement a successful, evidence-based online training and tele-support system for the Unstuck and On Target (UOT) program.

A team from Children’s National Hospital, Children’s Hospital Colorado and The Institute for Innovation and Implementation at the University of Maryland, Baltimore is working to implement a successful, evidence-based online training and tele-support system for the Unstuck and On Target (UOT) program. The program is now available for free to any parent or educator who needs it.

What is it?

Since 2020, this team has piloted UOT video training with 293 school-based staff across 230 elementary schools in Colorado and Virginia. The work follows a related PCORI-funded research project, Improving Classroom Behaviors Among Students with Symptoms of Autism Spectrum Disorder or Attention Deficit Hyperactivity Disorder, led by Children’s National and Children’s Colorado researchers. That project demonstrated the effectiveness of UOT at improving the executive functioning – or self-regulation skills including flexible thinking, planning and emotional-control – of school-aged children in Title 1 schools. The training focuses on the executive function of elementary school-aged children with autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD).

In addition to creating more accessible training for educators, the team created short, free videos highlighting executive functioning tips and tricks that parents can employ at home. These videos, evaluated by 100 parents and revised based on their input, are now available to parents nationwide.

The availability of this training is possible due to a $2 million contract awarded to Children’s Hospital Colorado’s (Children’s Colorado) Pediatric Mental Health Institute and Children’s National by the Patient-Centered Outcomes Research Institute (PCORI) in 2020.

Why it matters

There are many children, including those in low-income or rural settings, that don’t have access to clinics that offer services to support executive functioning skills, such as planning and flexibility, that they need. But all children have access to a school. Now, UOT training is online and accessible so any school with internet access can offer UOT where school staff (including special educators, teachers, paraprofessionals and counselors) can actively teach students how to plan, set goals and be flexible. The team’s next goal is to create a comparable video training for the high school version of UOT.

“These free, accessible and effective tools for improving children’s social-emotional development are building skills that are more important today than ever,” said Lauren Kenworthy, Ph.D., director of the Center for Autism Spectrum Disorders at Children’s National. “The vast majority (96%) of caregivers and educators found these tools useful and relevant. That feedback is a testament to our team’s efforts to make sure these resources were created and validated as usable, approachable and actionable for everyone who needs them.”

More information

For educators – Find resources on Unstuck and On Target, including links to the free trainings, tips and tricks and FAQs. Teachers can also receive continuing education credits (CEUs) for this training.

For parents – Find resources on Unstuck and On Target’s parent training videos

For schools – Add free Unstuck and On Target parent videos to your school district’s relevant websites, landing pages and newsletters.

Paper cutout of head with brainwaves

Lifesaving ICDs can cause anxiety, stress, PTSD for parents and kids

Paper cutout of head with brainwaves

Research shows that children with implantable cardioverter-defibrillators, and their parents, are at risk for anxiety, post-traumatic stress disorder and other psychological distress.

Recent advances in design and efficiency of implantable cardioverter-defibrillators (ICDs) have led to their increased use in younger patients, protecting more children with congenital heart disease from sudden cardiac arrest and sudden cardiac death, says a commentary in the journal Heart Rhythm. However, living longer with these devices and the day-to-day worry that they may have to deliver a lifesaving shock in the blink of an eye, may cause unusually high rates of anxiety, stress and other psychosocial distress for children with ICDs and their families.

Commentary authors Vicki Freedenberg, Ph.D., RN, electrophysiology nurse scientist, and Charles Berul, M.D., chief of cardiology, both from Children’s National Hospital, note that current available research shows both children with these ICDs and their parents are at risk for anxiety, post-traumatic stress disorder (PTSD) and other psychological distress. They highlight a new study published in the same journal that reports data related to prevalence and factors associated with PTSD in children with ICDs and their parents as a good start to better understanding these impacts.

Why it matters

Freedenberg and Berul say that the new study adds important information to an area without a lot of previous research. They also point out that understanding the long-term impacts of life with these devices is critical to ensuring the overall long-term health and wellbeing of both the children with these devices and their families.

What’s been the hold-up in the field?

The development of devices that work for younger children with congenital heart disease, including advances in ICDs and pacemakers, has increased in the last decade. In this time, studies of how these devices work for children have focused predominantly on clinical outcomes and questions related to clinical care.

As survival rates for children have increased, research needs to shift from the study of mortality and clinical outcomes toward understanding the full spectrum of how these devices impact daily life for these children and their families.

Moving the field forward

According to Freedenberg and Berul, the new study importantly includes both patient and parent perspectives, which is a first in this research area. They also offer recommendations for future studies, including the use of comparison groups to allow for generalization of findings. Researchers might also ask research questions to determine whether the device itself or the medical and non-medical factors that often occur simultaneously are more important to predicting mental health and wellbeing.

However, the commentary concludes with the most important takeaway: More research, with specific parameters focused on the impact of clinical interventions, is desperately needed to truly understand all the ways that children and their families are affected throughout life by the clinical care and support they receive.

Read the full commentary, Potential for shock leads to potential for stress, in the journal Heart Rhythm.

Mother helping son check blood sugar levels

Supporting parents and children through diabetes diagnosis

Mother helping son check blood sugar levels

Behavioral intervention can improve parents’ mood following their child’s diabetes diagnosis.

Results from a new study show that behavioral intervention improved parents’ mood following young children’s Type 1 diabetes diagnosis.

The study evaluated First STEPS, a stepped-care behavioral intervention designed to support parents’ psychosocial functioning and promote children’s glycemic outcomes. Results indicated likely benefits of parent coach support, supplemented by intervention intensifications, including behavioral intervention and diabetes education.

“We found that parent coaches, or parents of slightly older children with Type 1 diabetes who were trained in offering peer support, were helpful in reducing parent depressive symptoms up to one year and a half following diagnosis for parents in the stepped care group,” says Randi Streisand, Ph.D., C.D.C.E.S., Psychology and Behavioral Health division chief at Children’s National Hospital and senior author of the study. “The second study target, child glycemic control, was not significantly different between the two groups.”

What’s been the hold-up in the field?

There are unique challenges facing families of young children with Type 1 diabetes. However, typical care and management guidelines are not specific to young children.

“Many parents of children diagnosed with diabetes experience distress and symptoms of depression, yet parents are not routinely screened during clinic visits,” Dr. Streisand says. “Further, there are many barriers to mental health support.”

Moving the field forward

Findings also highlighted the potential for training lay people who have a shared lived experience (parent coaches), which could be incorporated into clinical programs.

Most behavioral interventions use behavioral health experts. The study’s experts demonstrated significant outcomes in parent mood by using parent coaches.

“The goal would be to incorporate parent coach programs into the clinic setting, to either offer the support to all families at the time of diagnosis or to screen families and provide support to those in need,” Dr. Streisand adds.

The authors affirm this model has high potential for patient engagement. Additionally, results showed that incorporating targeted behavioral support for intensive diabetes treatment may maximize intervention impact.

Other Children’s National authors include: Carrie Tully, Ph.D.; Christine Wang, Ph.D.; Lauren Clary, Ph.D.; Fran Cogen, M.D.; John Barber and Celia Henderson.

You can read the full study First STEPS: Primary Outcomes of a Randomized, Stepped-Care Behavioral Clinical Trial for Parents of Young Children With New-Onset Type 1 Diabetes in Diabetes Care.

Tired student studying online on laptop at home

Headache disorders and mental health worsened during pandemic

Tired student studying online on laptop at home

Children’s headaches and mental health worsened during pandemic, new study finds.

Since the beginning of the COVID-19 pandemic, many pediatric patients who suffer from headaches have experienced more frequent headaches and worsening anxiety and mood, and a new study finds links to stress, decreased physical activity and increased screen time.

The findings, published in the Journal of Child Neurology, showed that elevated stress associated with disruptions to daily life, social distancing practices and anxiety about the threat of illness to oneself and others brought on by the pandemic impacted the quality of life for kids with headache disorders.

“These findings are really impactful to me as a physician and a parent. It is important we gain a better understanding about how stress and changes in routine affect children’s wellbeing and mood,” says lead author Marc DiSabella, D.O., director of the Headache Program at Children’s National Hospital. “Things like moving to a virtual environment may have resulted in feelings of isolation and anxiety for kids, and increased screen time may have played a role in more frequent headaches.”

Migraine and other headache disorders are exceedingly common in adolescents and children. For this study, 107 patients completed a questionnaire from summer 2020 to winter 2021 examining changes in headache characteristics and lifestyle factors since the start of the pandemic. The survey found:

  • Pre-pandemic, 60% of patients reported having headaches less than 15 days of the month. After the start of the pandemic, that number dropped to 50%.
  • Patients reporting constant daily headaches went from 22% pre-pandemic to 36% after the start of the pandemic.
  • 49% of patients reported their headaches had worsened since the onset of the pandemic.
  • 54% of patients reported that their physical activity levels decreased because of the pandemic.
  • When asked about screen use during the pandemic, 61% of patients reported using screens for more than six hours a day.

The authors of the study note that whether or not increased screen time worsens headaches has not yet been clearly established; however, patients and families routinely cite screen use as a headache trigger. Lack of physical exercise is also often cited as a migraine trigger.

“Having a headache every day, all the time, with no break in sight, is really frustrating to children and their parents,” Dr. DiSabella adds. “They just want to be a normal child, yet have no control over when the pain increases, and they suddenly are unable to do simple activities like reading a book or seeing friends, which adds to the uncertainty of their future.”

Participants also reported worsened anxiety, mood and workload. According to the authors, this is likely to affect headache patients given their elevated rates of anxiety and depression.

“We already know that patients with headache disorders have disproportionately high rates of mood complaints, including anxious and depressive symptoms,” Dr. DiSabella says. “The fact that our patients reported this worsened during quarantine is an additional stress on their already complex lives, managing pain, school and extra-curricular activities.”

While the study is limited by sample size and observational design, future population-based studies will further explain the impact of this pandemic on kids who suffer from headaches. In the interim, Dr. DiSabella recommends parents talk with their children about how the pandemic has impacted their headaches and mood. He also recommends offering children help, either at home or with a professional trained in child psychology.

boy getting vaccinated

Adolescents with ADHD more hesitant to get COVID-19 vaccine

boy getting vaccinatedAdolescents with attention-deficit/hyperactivity disorder (ADHD) report greater hesitancy and less confidence in COVID-19 vaccine safety compared to adolescents without ADHD, a new study finds.

For all adolescents in the study, those who identified as Black or Latino — and came from families with lower income levels — were more likely to be vaccine hesitant and report lower confidence in the safety of COVID-19 vaccines.

Whereas greater COVID-19 concerns, compliance to social distancing guidelines, media use and perceived negative impact of COVID-19 on relationships was associated with greater vaccination willingness.

The study, led by Melissa Dvorsky, Ph.D., director of ADHD & Learning Differences Program at Children’s National Hospital, also highlighted that:

  • Adolescents with ADHD who engage in large gatherings indoors are at greater risk for vaccine hesitancy.
  • Interventions should target social-cognitive processes for adolescent vaccination.

“Adolescents with ADHD being more vaccine hesitant is perhaps in part due to core risk mechanisms associated with ADHD, likely impacting planning, motivation and execution of vaccination, adolescents’ risk appraisal, and perceived susceptibility to COVID-19,” Dr. Dvorsky said. “Our study also found key social mechanisms predicted increased vaccine acceptance and uptake, and these factors should be leveraged in ongoing initiatives addressing vaccine uptake among teens.”

Findings have important implications for health and mental health providers and educational strategies aimed at promoting COVID-19 vaccinations in adolescents.

Earlier this month, Mayor Muriel Bowser and DC Health announced amplified efforts to encourage families to vaccinate youth ahead of the upcoming 2022-2023 school year, sending a message that students must get caught up on vaccinations over the summer. In addition to expanding access to vaccination services, a concerted effort, Dvorsky added, is needed to increase trust, confidence, motivation and social relevance among adolescents. This is especially true for those with ADHD and from lower socio-economic backgrounds.

“As health and mental health care providers, we are uniquely positioned to offer effective communication using strong, presumptive language with all adolescents in our community to address vaccine hesitancy. Adolescents with ADHD, in particular, can benefit from frequent behavioral ‘nudges’ (such as prompts or reminders, automatic appointments) and social/motivational strategies (such as social network interventions, peer-delivered approaches, motivational interviewing) to increase vaccine uptake.”

It’s important to note that research addressing adolescent COVID-19 vaccination willingness and readiness remains scarce.

The study included 196 adolescents (87 male) ages 16-18 from two sites in the Southeastern and Midwestern United States. Participants were high school students in 11th and 12th grade during the 2020-2021 school year. Participants came from a range of socioeconomic backgrounds, with 21% of families falling below the 2019 U.S. median household income ($68,703). Approximately half of the participants were comprehensively diagnosed with ADHD prior to COVID-19.

US News Badges

Children’s National named to U.S. News & World Report’s Best Children’s Hospitals Honor Roll

US News BadgesChildren’s National Hospital in Washington, D.C., was ranked No. 5 nationally in the U.S. News & World Report 2022-23 Best Children’s Hospitals annual rankings. This marks the sixth straight year Children’s National has made the list, which ranks the top 10 children’s hospitals nationwide. In addition, its neonatology program, which provides newborn intensive care, ranked No.1 among all children’s hospitals for the sixth year in a row.

For the twelfth straight year, Children’s National also ranked in all 10 specialty services, with seven specialties ranked in the top 10.

“In any year, it would take an incredible team to earn a number 5 in the nation ranking. This year, our team performed at the very highest levels, all while facing incredible challenges, including the ongoing pandemic, national workforce shortages and enormous stress,” said Kurt Newman, M.D., president and chief executive officer of Children’s National. “I could not be prouder of every member of our organization who maintained a commitment to our mission. Through their resilience, Children’s National continued to provide outstanding care families.”

“Choosing the right hospital for a sick child is a critical decision for many parents,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “The Best Children’s Hospitals rankings spotlight hospitals that excel in specialized care.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals and recognizes the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News.

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

The seven Children’s National specialty services that U.S. News ranked in the top 10 nationally are:

The other three specialties ranked among the top 50 were cardiology and heart surgerygastroenterology and gastro-intestinal surgery, and urology.

Dr. Limperopoulos talks to a mom

Pandemic-related stressors in pregnant women affect fetal brain development

Dr. Limperopoulos talks to a mom

Dr. Catherine Limperopoulos walking with a mom.

Prolonged levels of stress and depression during the COVID-19 pandemic contributed to altering key features of fetal brain development — even if the mother was not infected by the virus. This is what a study published in Communications Medicine suggests after following more than 200 pregnant women. The study, led by Children’s National Hospital experts, emphasized the need for more scientific inquiry to shed light on the long-term neurodevelopmental consequences of their findings and COVID-19 exposures on fetal brain development.

“Understanding how contemporary stressors may influence fetal brain development during pregnancy has major implications for basic science and informing public policy initiatives,” said Catherine Limperopoulos, Ph.D., chief and director of the Developing Brain Institute at Children’s National and senior author of the study. “With this work, we are able to show there’s a problem, it’s happening prenatally, and we can use this model to start exploring how we can reduce stress in moms and support unborn babies.”

To better understand the effects of environmental exposures on the fetus during pregnancy, further confirmation of the team’s latest findings is needed by ruling out other possibilities, such as maternal nutrition, financial security and genetic factors.

The psychosocial impact of COVID-19 on fetal brain development remains vastly understudied. The neurologic underpinnings of fetal development that turn into psycho-behavioral disorders later in life, including bipolar disorder, mood disorder or anxiety disorder, remain complex and difficult to explain.

Among the 202 participants from the Washington D.C. metropolitan area, 137 were part of the pre-pandemic cohort and 65 were part of the pandemic cohort.

Through advanced MRI imaging techniques and reconstruction of high-resolution 3D brain models, the researchers found a reduction of fetal white matter, hippocampal and cerebellar volumes and delayed brain gyrification in COVID-19 pandemic-era pregnancies. Validated maternal stress, anxiety and depression scales were also used to compare the scores between the two cohorts.

This study builds upon previous work from the Developing Brain Institute led by Limperopoulos, which discovered that anxiety in pregnant women appears to affect the brain development of their babies. Her team also found that maternal mental health, even in high socioeconomic status, alters the structure and biochemistry of the developing fetal brain, emphasizing the importance of mental health support for pregnant women.

“We’re looking at modifiable conditions,” said Limperopoulos. “What’s clear is the next frontier is intervening early to see how we can prevent or reduce stress in the mom’s current setting.”

pregnant woman by window

Stress during pregnancy may hinder cognitive development

pregnant woman by window

This is the first study to shed light on an important link between altered in-utero fetal brain development and the long-term cognitive development consequences for fetuses exposed to high levels of toxic stress during pregnancy.

Women’s elevated anxiety, depression and stress during pregnancy altered key features of the fetal brain, which subsequently decreased their offspring’s cognitive development at 18 months. These changes also increased internalizing and dysregulation behaviors, according to a new study by Children’s National Hospital published in JAMA Network Open. Researchers followed a cohort of 97 pregnant women and their babies. The findings further suggest that persistent psychological distress after the baby is born may influence the parent-child interaction and infant self-regulation.

This is the first study to shed light on an important link between altered in-utero fetal brain development and the long-term cognitive development consequences for fetuses exposed to high levels of toxic stress during pregnancy. While in the womb, the researchers observed changes in the sulcal depth and left hippocampal volume, which could explain the neurodevelopment issues seen after birth. Once they grow into toddlers, these children may experience persistent social-emotional problems and have difficulty establishing positive relationships with others, including their mothers. To further confirm this, future studies with a larger sample size that reflect more regions and populations are needed.

“By identifying the pregnant women with elevated levels of psychological distress, clinicians could recognize those babies who are at risk for later neurodevelopmental impairment and might benefit from early, targeted interventions,” said Catherine Limperopoulos, Ph.D., chief and director of the Developing Brain Institute at Children’s National and senior author of the study.

Catherine Limperopoulos

“By identifying the pregnant women with elevated levels of psychological distress, clinicians could recognize those babies who are at risk for later neurodevelopmental impairment and might benefit from early, targeted interventions,” said Catherine Limperopoulos, Ph.D., chief and director of the Developing Brain Institute at Children’s National and senior author of the study.

Regardless of their socioeconomic status, about one of every four pregnant women suffers from stress-related symptoms, the most common pregnancy complication. The relationship between altered fetal brain development, prenatal maternal psychological distress and long-term neurodevelopmental outcomes remain unknown. Studying in utero fetal brain development poses challenges due to fetal and maternal movements, imaging technology, signal-to-noise ratio issues and changes in brain growth.

All pregnant participants were healthy, most had some level of education and were employed. To quantify prenatal maternal stress, anxiety and depression, the researchers used validated self-reported questionnaires. Fetal brain volumes and cortical folding were measured from three-dimensional reconstructed images derived from MRI scans. Fetal brain creatine and choline were quantified using proton magnetic resonance spectroscopy. The 18-month child neurodevelopment was measured using validated scales and assessments.

This study builds upon previous work from the Developing Brain Institute led by Limperopoulos, which discovered that anxiety in pregnant women appears to affect the brain development of their babies. Her team also found that maternal mental health, even for women with high socioeconomic status, alters the structure and biochemistry of the developing fetal brain. The growing evidence underscores the importance of mental health support for pregnant women.

“We’re looking at shifting the health care paradigm and adopting these changes more broadly to better support moms,” said Limperopoulos. “What’s clear is early interventions could help moms reduce their stress, which can positively impact their symptoms and thereby their baby long after birth.”

mother and daughter embracing

Understanding end-of-life treatment preferences for adolescents

mother and daughter embracing

FACE-TC effectively increases communication between adolescents with cancer and their families about the patients’ preferences.

Talking about death and dying is taboo. Some families believe it is their role alone to make end-of-life healthcare decisions or they may believe pediatric advance care planning is against their religion.

In a recent trial, Maureen Lyon, Ph.D., a clinical health psychologist at Children’s National Hospital and lead author of the study, analyzed the value of high-quality pediatric advance care planning and how this enabled families to know their adolescents’ end-of-life treatment preferences.

This is the first fully powered randomized controlled trial to focus on adolescents with cancer and their engagement with their families in pediatric advance care planning conversations.

What this means

Some physicians believe it is not their role to discuss the “what ifs.” Others report that they do not have the training or time to do so. As a result, in clinical practice, adolescents living with a serious illness rarely have documented advance care plans. The default is to provide intensive treatments that potentially increase suffering.

“Despite cancer being the leading cause of disease-related death in adolescents, conversations about goals of care and documentation of end-of-life care and treatment preferences for adolescents with cancer are not a routine and standard part of care,” Dr. Lyon said.

Why it matters

Family-centered advance care planning for teens with cancer (FACE-TC) effectively increases communication between adolescents with cancer and their families about the patients’ end-of-life preferences. This meets the first challenge of pediatric advance care planning – knowledge of patient’s preferences.

This low-tech intervention commits to more deeply respecting adolescents with cancer, integrating them into health care decision-making and giving them some control in a low control situation.

The patient and family benefits

“FACE-TC strengthens communication between adolescents with cancer and their families about adolescents’ understanding of their illness, their hopes and fears, their goals of care and their end-of-life treatment preferences,” Dr. Lyon added. “With increased access to palliative care services and pediatric advance care planning, families may better understand that stopping intensive medical interventions when their child is dying is not giving up, but rather choosing how best to spend the final days of one’s life.”

Dr. Lyon and the team at Children’s National have pioneered this effort to give seriously ill adolescents a voice and help families break the ice so they know what their child would want if the worst were to happen. The team also aims to provide an extra level of support for busy clinicians so the first conversation about goals of end-of-life care does not happen in the intensive care unit.

You can read the full trial, An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial, in Pediatrics.

You can also read the last manuscript from this clinical trial, Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences, in JAMA Network.