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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.

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.

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.

pregnant woman holding eggs

How does diet during pregnancy impact allergies in offspring?

pregnant woman holding eggs

A small percentage of women said they consumed fewer allergens during pregnancy to stave off food allergies in their newborns, according to preliminary research Karen Robbins, M.D., presented during the American College of Asthma Allergy and Immunology 2018 Annual Scientific Meeting.

Pregnant women routinely swear off alcohol and tobacco to boost their chances of having a healthy baby. What about common food allergens like nuts and milk?

There are scant data that describe how often pregnant women deliberately stop eating a specific food item in order to prevent future food allergies in their newborns. As a first step toward addressing this data gap, a research team led by Karen Robbins, M.D., an allergist at Children’s National Health System, pored through a longitudinal study conducted by the Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention.

About 4,900 pregnant women completed the Infant Feeding Practices Study II prenatal questionnaire from May 2005 to June 2007. The study tracked 2,000 pregnant women from the third trimester of pregnancy and their infants through the first year of life. A small percentage of women said they had consumed fewer allergens during pregnancy to stave off food allergies in their newborns, according to a poster Dr. Robbins presented during the American College of Asthma Allergy and Immunology 2018 Annual Scientific Meeting. While their numbers were small, most of these women reported giving up major allergens like nuts, milk or eggs during pregnancy, including:

  • 144 (2.9 percent) reported restricting their diet in some way to prevent future food allergies in their offspring
  • 84 women (1.7 percent) ate fewer nuts
  • 15 women (.3 percent) ate fewer eggs and
  • 2 women (.04 percent) ate/drank consumed less dairy/milk.

“At the time the survey was conducted, few pregnant women in this large data set said they gave up certain foods with the express aim of avoiding a food allergy in their babies,” Dr. Robbins says. “However, mothers who had an older child with a food allergy or who had food allergies themselves had significantly higher odds of trying this food avoidance strategy.”

Despite the diet changes, infants born to these expectant mothers were twice as likely to experience problems with food at age 4 months – though not at age 9 months or 12 months. And these infants were no more likely to be diagnosed with a food allergy.

According to the FDA, millions of Americans suffer a food allergy each year. Reactions can range from mild to life-threatening and can begin soon after eating a problematic food item or an ingredient from that food. Among the most common allergenic foods are milk, eggs, fish, shellfish, tree nuts, peanuts, wheat and soybeans.

“We really need to know more about how often targeted food avoidance occurs among U.S. pregnant women who have a family history of food allergies,” Dr. Robbins adds. “We hope to learn what factors into these women’s decision-making as well as why many of them settled on food avoidance as a potential strategy to try to prevent food allergy in their infants.”

American College of Asthma Allergy and Immunology 2018 Annual Scientific Meeting presentation

  • “Prenatal food allergen avoidance practices for food allergy prevention.”

Karen Robbins M.D., lead author; Ashley Ramos Ph.D., co-author; Marni Jacobs, Ph.D., co-author; Kate Balas BS, co-author; and Linda Herbert, Ph.D., director of Children’s Division of Allergy and Immunology’s psychosocial clinical program, and senior author.

Dr. Andrew Campbell examines a child

Children’s National physicians provide education at 46th Annual Sickle Cell Disease Association of America Convention

Dr. Andrew Campbell examines a child

Andrew Campbell, M.D., presented at the conference on the topics of hydroxyurea (HU) and blood transfusions.

More than 600 researchers, physicians, nurses, social workers and individuals living with sickle cell disease (SCD) and sickle cell trait (SCT) gathered in Baltimore for the 46th Annual National Sickle Cell Disease Association of America (SCDAA) Convention in mid-October. Children’s National physicians Andrew Campbell, M.D., director of the Comprehensive Sickle Cell Program, and Deepika Darbari, M.D., were among the speakers at the four-day convention discussing the latest scientific research and clinical information through seminars, panel discussions and symposiums.

Dr. Campbell presented at the conference on the topics of hydroxyurea (HU) and blood transfusions. He spoke to families about the benefits of HU, explaining how it lowers the percentage of sickle cells in the blood and decreases the overall inflammatory process. He stressed the importance of HU as a medication used in the prevention of SCD and emphasized the potential decrease in organ damage and increased overall survival rate of SCD patients. The importance of minor antigen blood group phenotyping was also discussed, as it can decrease the chance of patients rejecting future blood transfusions by developing new red blood cell antibodies.

“The indications for blood transfusions in the acute ‘ill’ setting can be life-saving and improve oxygen delivery and overall clinical outcomes within sickle cell complications, including acute chest syndrome, stroke and splenic sequestration. Approximately 10 to 15 percent of patients will need monthly blood transfusions for primary (i.e. stroke, patients with abnormal brain vessel TCD velocities >200cm/s) and secondary (i.e. patients with a previous stroke, multiple splenic sequestrations, recurrent priapism, recurrent acute chest syndromes) sickle cell complications,” explains Dr. Campbell.

Dr. Darbari, a hematologist at Children’s National, educated medical colleagues on chronic pain in SCD and emphasized the increase in pain from adolescence to adulthood.

“During childhood, pain in SCD is considered a consequence of discrete episodes of vaso-occlusion.  Such vaso-occlusion is a complex process in which abnormally shaped (so-called ‘sickled’) red blood cells episodically obstruct the microcirculation thereby causing distal ischemia and resultant pain. As patients get older, mechanisms such as peripheral neuropathic or centralization may play important roles in transition and maintenance of chronic pain. It is important to consider underlying mechanisms contributing to pain when managing a patient with SCD,” states Dr. Darbari. She referenced her coauthored and published Analgesic, Anesthetic and Addiction Clinical Trial Translations Innovations Opportunities and Networks (ACTTION)-American Pain Society Taxonomy (AAPT) criteria for classifying chronic pain in SCD and how useful this tool can be for physicians in the treatment of patients with SCD.

Both Drs. Campbell and Darbari shared their expertise on different facets of SCD with families and medical professionals alike. Their impactful work is paving the way for future treatments and pain management techniques for treating patients living with SCD and their families.

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

ambulance

Accident or assault? Pediatric firearm injuries differ by age

ambulance

According to a retrospective, cross-sectional study led by Children’s researchers, younger kids are more likely to be shot by accident, and odds are higher that older youths are victims of an assault involving a firearm.

An increasing number of children are injured by firearms in the U.S. each year, but the reasons these injuries happen vary. According to a new retrospective, cross-sectional study led by Children’s researchers and presented at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition, firearm injuries vary by the intent of the person discharging the weapon. Younger kids are more likely to be shot by accident, and odds are higher that older youths are victims of an assault involving a firearm. Efforts to protect children from firearm-related injuries should factor in these differences in intent as legislation and policies are drafted, the study team suggests.

Researchers led by Shilpa J. Patel, M.D., MPH, Children’s assistant professor of pediatrics and emergency medicine, reviewed data aggregated in the Nationwide Emergency Department Sample from 2009 to 2013 looking for emergency department visits to treat firearm-related injuries suffered by children and adolescents 21 and younger. They excluded emergency department visits for firearm-related injuries attributed to air, pellet, BB or paintball guns.

Firearm-related injuries are a leading cause of injury and death for U.S. children. Some 111,839 children and youth were treated in emergency departments for firearm-related injuries, or 22,367 per year when averaged over the five-year study period. Nearly 63 percent of these youths were injured by accident; 30.4 percent were victims of assault; 1.4 percent used a firearm to injure themselves. Of note:

  • 89.3 percent were male
  • Their mean age was 18 (67.3 percent 18 to 21; 27.9 percent 13 to 17; 4.8 percent younger than 12)
  • 1 percent were discharged from the emergency department
  • 30 percent had injuries grave enough to trigger hospital admission and
  • 1 percent died from their injuries.

“Children younger than 12 were more likely to be shot by accident. By contrast, we found that the odds of experiencing firearm-related injuries due to assault were higher for youths aged 18 to 21,” Dr. Patel says. “Physicians can play a powerful role in preventing pediatric firearm-related injuries by routinely screening for firearm access and speaking with families about safe firearm storage and violence prevention,” she adds.

Some 52.1 percent of children with firearm-related injuries lived with families whose median household incomes exceeded $56,486.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Emergency department visits for pediatric firearm-related injury: by intent of injury.”

Shilpa J. Patel, M.D., MPH, assistant professor of pediatrics and emergency medicine and lead author, Gia M. Badolato, MPH, senior clinical research data manager and study co-author, Kavita Parikh, M.D., MS, associate professor of pediatrics and study co-author, and Monika K. Goyal, M.D., MSCE, assistant division chief and director of Academic Affairs and Research in the Division of Emergency Medicine and study senior author, all of Children’s National Health System; and Sabah F. Iqbal, M.D., medical director, PM Pediatrics, study co-author.

Femoral fracture

Broken system? Pain relief for fractures differs by race/ethnicity

Femoral fracture

Data collected by a multi-institutional research team show that kids’ pain from long bone fractures may be managed differently in the emergency department depending on the child’s race and ethnicity.

Children who experience broken bones universally feel pain. However, a new multi-institutional study presented at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition suggests that emergency treatment for this pain among U.S. children is far from equal. Data collected by the research team show that kids’ pain may be managed differently in the emergency department depending on the child’s race and ethnicity. In particular, while non-Latino black children and Latino children are more likely to receive any analgesia, non-white children with fractured bones are less likely to receive opioid pain medications, even when they arrive at the emergency department with similar pain levels.

“We know from previously published research that pain may be treated differentially based on a patient’s race or ethnicity in the emergency department setting. Our prior work has demonstrated that racial and ethnic minorities are less likely to receive opioid analgesia to treat abdominal pain, even when these patients are diagnosed with appendicitis,” says study leader Monika K. Goyal, M.D., MSCE, assistant division chief and director of Academic Affairs and Research in the Division of Emergency Medicine at Children’s National Health System. “Emergency departments delivering evidence-based care should treat all pediatric patients consistently. These findings extend our work by demonstrating that children presenting with long bone fractures also experience differential treatment of pain based on their race or ethnicity.”

The AAP calls appropriately controlling children’s pain and stress “a vital component of emergency medical care” that can affect the child’s overall emergency medical experience. Because fractures of long bones – clavicle, humerus, ulna, radius, femur, tibia, fibula – are commonly managed in the emergency department, the research team tested a hypothesis about disparities in bone fracture pain management.

They conducted a retrospective cohort study of children and adolescents 21 and younger who were diagnosed with a long bone fracture from July 1, 2014, through June 30, 2017. They analyzed deidentified electronic health records stored within the Pediatric Emergency Care Applied Research Network Registry, which collects data from all patient encounters at seven pediatric emergency departments.

During that time, 21,642 patients with long bone fractures met the study inclusion criteria and experienced moderate to severe pain, rating four or higher on a 10-point pain scale. Some 85.1 percent received analgesia of any type; 41.5 percent received opioid analgesia. Of note:

  • When compared with non-Hispanic white children, minority children were more likely to receive pain medication of any kind (i.e. non-Latino black patients were 58 percent more likely to receive any pain medication, and Latino patients were 23 percent more likely to receive any pain medication).
  • When compared with non-Latino white children, minority children were less likely to receive opioid analgesia (i.e., non-Latino black patients were 30 percent less likely to receive opioid analgesia, and Latino patients were 28 percent less likely to receive opioid analgesia).

“Even though minority children with bone fractures were more likely to receive any type of pain medication, it is striking that minority children were less likely to receive opioid analgesia, compared with white non-Latino children,” Dr. Goyal says. “While it’s reassuring that we found no racial or ethnic differences in reduction of patients’ pain scores, it is troubling to see marked differences in how that pain was managed.”

Dr. Goyal and colleagues are planning future research that will examine the factors that inform how and why emergency room physicians prescribe opioid analgesics.

American Academy of Pediatrics National Conference & Exhibition presentation

  • “Racial and ethnic differences in the management of pain among children diagnosed with long bone fractures in pediatric emergency departments.”

Monika K. Goyal, M.D., MSCE, and James M. Chamberlain, M.D., Children’s National; Tiffani J. Johnson, M.D., MSc, Scott Lorch, M.D., MSCE, and Robert Grundmeier, M.D., Children’s Hospital of Philadelphia; Lawrence Cook, Ph.D., Michael Webb, MS, and Cody Olsen, MS, University of Utah School of Medicine; Amy Drendel, DO, MS, Medical College of Wisconsin; Evaline Alessandrini, M.D., MSCE, Cincinnati Children’s Hospital; Lalit Bajaj, M.D., MPH, Denver Children’s Hospital; and Senior Author, Elizabeth Alpern, M.D., MSCE, Lurie Children’s Hospital.

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.

QUILT conference

Children’s National hosts Quality Improvement Leadership Training Course

QUILT conference

In October 2018, Children’s National hosted 20 neonatologists from 15 hospitals in China for a 10 day Quality Improvement Leadership Training Course focused on quality improvement principles and methodology. The course also featured presentations on hospital-wide quality improvement work and included speakers from the Quality & Safety Department, Nursing Quality, and the Neonatal Intensive Care Unit (NICU). The Performance Improvement team worked with the attendees on their own projects, such as reducing antibiotic use and increasing family-centered care in the NICU. The attendees then presented at the end of the course to their colleagues, as well as to five hospital presidents visiting from China.

neuron

Children’s National to host 29th Annual Pediatric Neurology Update

neuron

The Children’s National Health System Center for Neuroscience and Behavioral Medicine is proud to host the 29th Annual Pediatric Neurology Update course.

This year’s course will focus on three critical areas in pediatric neuroscience and neurodevelopment: epilepsy with focuses on innovations in epilepsy surgery and new therapeutics; tuberous sclerosis including neurosurgical advances and transition to adulthood; and autism spectrum disorder with emphasis on new understandings and pre-requisites for an “Autism Friendly Hospital.”

We invite you to join us for presentations from renowned experts in the field in this full-day, CME accredited event on April 11, 2019 at the Bethesda North Marriott Hotel & Conference Center in Rockville, MD.

For more information and to register, visit ChildrensNational.org/NeurologyUpdate.

Charles Berul and Rohan Kumthekar demonstrate tiny pacemaker

A new prototype for tiny pacemakers, faster surgery

Charles Berul and Rohan Kumthekar demonstrate tiny pacemaker

Charles Berul, M.D., chief of cardiology at Children’s National, and Rohan Kumthekar, M.D., a cardiology fellow working in Dr. Berul’s bioengineering lab at the Sheikh Zayed Institute for Pediatric Surgical Innovation, explore ways to make surgical procedures for infants and children less invasive.

Rohan Kumthekar, M.D., a cardiology fellow working in Dr. Charles Berul’s bioengineering lab at the Sheikh Zayed Institute for Pediatric Surgical Innovation, part of Children’s National Health System, presented a prototype for a miniature pacemaker at the American Heart Association’s Scientific Sessions 2018  on Sunday, Nov. 11. The prototype, approximately 1 cc, the size of an almond, is designed to make pacemaker procedures for infants less invasive, less painful and more efficient, measured by shorter surgeries, faster recovery times and reduced medical costs.

Kumthekar, a Cardiovascular Disease in the Young Travel Award recipient, delivered his oral abstract, entitled “Minimally Invasive Percutaneous Epicardial Placement of a Custom Miniature Pacemaker with Leadlet under Direct Visualization,” as part of the Top Translational Science Abstracts in Pediatric Cardiology session.

“As cardiologists and pediatric surgeons, our goal is to put a child’s health and comfort first,” says Kumthekar. “Advancements in surgical fields are tending toward procedures that are less and less invasive. There are many laparoscopic surgeries in adults and children that used to be open surgeries, such as appendix and gall bladder removals. However, placing pacemaker leads on infants’ hearts has always been an open surgery. We are trying to bring those surgical advances into our field of pediatric cardiology to benefit our patients.”

Instead of using open-chest surgery, the current standard for implanting pacemakers in children, doctors could implant the tiny pacemakers by making a relatively tiny 1-cm incision just below the ribcage.

“The advantage is that the entire surgery is contained within a tiny 1-cm incision, which is what we find groundbreaking,” says Kumthekar.

With the help of a patented two-channel, self-anchoring access port previously developed by Berul’ s research group, the operator can insert a camera into the chest to directly visualize the entire procedure. They can then insert a sheath (narrow tube) through the second channel to access the pericardial sac, the plastic-like cover around the heart. The leadlet, the short extension of the miniature pacemaker, can be affixed onto the surface of the heart under direct visualization. The final step is to insert the pacemaker into the incision and close the skin, leaving a tiny scar instead of two large suture lines.

The median time from incision to implantation in this thoracoscopic surgery study was 21 minutes, and the entire procedure took less than an hour on average. In contrast, pediatric open-heart surgery could take up to several hours, depending on the child’s medical complexities.

“Placing a pacemaker in a small child is different than operating on an adult, due to their small chest cavity and narrow blood vessels,” says Kumthekar. “By eliminating the need to cut through the sternum or the ribs and fully open the chest to implant a pacemaker, the current model, we can cut down on surgical time and help alleviate pain.”

The miniature pacemakers and surgical approach may also work well for adult patients with limited vascular access, such as those born with congenital heart disease, or for patients who have had open-heart surgery or multiple previous cardiovascular procedures.

The miniature pacemakers passed a proof-of-concept simulation and the experimental model is now ready for a second phase of testing, which will analyze how the tailored devices hold up over time, prior to clinical testing and availability for infants.

“The concept of inserting a pacemaker with a 1-cm incision in less than an hour demonstrates the power of working with multidisciplinary research teams to quickly solve complex clinical challenges,” says Charles Berul, M.D., a guiding study author, electrophysiologist and the chief of cardiology at Children’s National.

Berul’s team from Children’s National collaborated with Medtronic PLC, developers of the first implantable pacemakers, to develop the prototype and provide resources and technical support to test the minimally-invasive surgery.

The National Institutes of Health provided a grant to Berul’s research team to develop the PeriPath, the all-in-one 1-cm access port, which cut down on the number of incisions by enabling the camera, needle, leadlet and pacemaker to be inserted into one port, through one tiny incision.

Other study authors listed on the abstract presented at Scientific Sessions 2018 include Justin Opfermann, M.S., Paige Mass, B.S., Jeffrey P. Moak, M.D., and Elizabeth Sherwin, M.D., from Children’s National, and Mark Marshall, M.S., and Teri Whitman, Ph.D., from Medtronic PLC.

ASCAT Conference Attendees

Children’s National represented at ASCAT conference in London

ASCAT Conference Attendees

From left to right: Lisa Thaniel, Ph.D., Brittany Moffitt, Deepika Darbara, M.D., Steven Hardy, Ph.D., Andrew Campbell, M.D., Barbara Speller-Brown, DNP, Stefanie Margulies and Karen Smith-Wong all represented Children’s National at the ASCAT Conference in London.

Deepika Darbari, M.D., Andrew Campbell, M.D., and Steven Hardy, Ph.D., represented Children’s National at the Annual Sickle Cell Disease and Thalassemia (ASCAT) Conference in London in late October. The theme of this year’s conference was Sickle Cell Disease and Thalassemia: Bridging the Gap in Care and Research.

Dr. Darbari, a Children’s National hematologist, was the featured Grand Rounds speaker and led a pain management symposium. Dr. Darbari studies complications of sickle cell disease with an emphasis on pain. She conducts clinical and translational studies to better understand sickle cell pain and its management. She addressed the topics of pain mechanisms and phenotypes in sickle cell disease during her symposium.

Dr. Campbell, Director of the Comprehensive Sickle Cell Disease Program at Children’s National, has served on the steering committee for this annual international conference for the past two years, working alongside colleagues from across the globe to bring together multiple experts who work with children with blood disorders. Dr. Campbell remarks, “I’m pleased to promote and be a part of [this conference] because it’s one of the best sickle cell/thalassemia conferences in the world pushing the field forward with international representation.” He spoke at the conference during Dr. Darbari’s symposium, discussing sickle cell disease pain around the globe.

Dr. Hardy, a pediatric psychologist in the divisions of Blood and Marrow Transplant, Blood Disorders (Hematology) and Oncology and the Center for Cancer and Blood Disorders at Children’s National, also presented at the conference on his abstract “Computerized Working Memory Training Improves Cognition in Youth with Sickle Cell Disease.” His abstract received the Best Oral Abstract Award at the conference and was awarded a 500 pound prize. In his work at Children’s National, Dr. Hardy provides evidence-based psychological assessments and treatments for children with cancer, sickle cell disease and other blood disorders, as well as those patients undergoing bone marrow transplants.

Poster presentations were also given by Barbara Speller Brown, NP, DNP, Lisa Thaniel, MSW, Ph.D., Brittany Moffitt, MSW, and Stefanie Margulies, senior clinical research coordinator, all representing Children’s National at the ASCAT Conference.

Javad Nazarian

Meeting of the minds: Children’s National hosts first DIPG Round Table Discussion

Javad Nazarian at DIPG Round Table Discussion

Spearheaded by Javad Nazarian, Ph.D., MSC, Scientific Director of the Children’s National Brain Tumor Institute, the focused DIPG Round Table Discussion brought investigators, neurosurgeons and clinicians from North America, Europe and Australia to Children’s National in Washington, D.C.

Over 40 experts involved in the study and treatment of diffuse intrinsic pontine gliomas (DIPG) convened at the inaugural DIPG Round Table Discussion at Children’s National Health System Sept. 30-Oct. 2.

Spearheaded by Javad Nazarian, Ph.D., MSC, Scientific Director of the Children’s National Brain Tumor Institute, the focused DIPG Round Table Discussion brought investigators, neurosurgeons and clinicians from North America, Europe and Australia to Children’s National in Washington, D.C., to engage in dialogue and learn about the changing landscape of DIPG tumor biology and therapeutics. Attendees discussed the recent discoveries in DIPG research, precision medicine, preclinical modeling, immunotherapy, data sharing and the design of next generation clinical trials.

Families affected by DIPG also had an opportunity to participate in day 2 of the event. Many voiced the necessity of data sharing to ensure progress in the field. Dr. Nazarian seconded that point of view: “It is critical to get raw data and have it harmonized and integrated so that the end users (researchers) can utilize and do cross-data analysis…We need to break down the silos.” The highlight of the data sharing session was the Open DIPG Initiative that is spearheaded by Dr. Nazarian and the Children’s Brian Tumor Tissue Consortium (CBTTC).

Nazarian Lab at DIPG Roundtable Meeting

Eshini Panditharatna, Ph.D., Madhuri Kambhampati, Sridevi Yadavilli, M.D., Ph.D., and Erin Bonner of Children’s National at the DIPG Round Table.

As recent technological and molecular advances in DIPG biology have pushed the field forward, focus groups have become essential to share data, ideas and resources with the overarching goal of expediting effective treatments for children diagnosed with DIPG. An extremely aggressive form of pediatric brain cancer, DIPG accounts for roughly 10 to 15 percent of all brain tumors in children. Between 300 and 400 children in the United States are diagnosed with DIPG each year, but the 5-year survival for the brain tumor is less than 5 percent, a strikingly low number in comparison with other types of childhood cancer. DIPG research and clinical initiatives have changed in the past years mainly due to the generous support of families for basic research. The DIPG Open Table meeting was designed to coalesce a team of experts to expedite the first crack at curing this devastating childhood cancer.

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.”

Tory Peitz and Victoria Catalano

Making weight: Ensuring that micro preemies gain pounds and inches

Tory Peitz and Victoria Catalano

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

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

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

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

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

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

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

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

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

Roger Packer

From discovery to ‘no excuses’ in neuro-oncology

For more than three decades, the world’s pre-eminent scientists and clinicians in pediatric neuro-oncology have convened the International Symposium on Pediatric Neuro-oncology every two years. Their goal is to advance the care and treatment of pediatric brain and central nervous system tumors by connecting across disciplines to share research findings and discuss the latest treatment approaches.

This year for the first time, representatives from parent advocacy groups and patient support foundations were also invited to attend the traditionally scientific meeting. Their inclusion allowed care providers and scientific investigators to make sure the voices of patients and families, and their needs, are heard.

Roger J. Packer, M.D., senior vice president of the Center for Neuroscience and Behavioral Medicine at Children’s National Health System, served as international organizing committee chair this year. He was chair and organizer of the very first symposium, held in 1986, and has led additional sessions over the years.

Dr. Packer had the honor of giving the opening keynote address to more than 1,200 participants in Denver this year. He used his lecture to highlight some of the amazing knowledge leaps made in the last decade in understanding the molecular makeup and genetics behind brain and spinal cord tumors.

“We’ve made more discoveries in these areas in the last 10 years than we made in the 50 years before that. It’s been a phenomenal decade for discovery,” he notes.  “But the fact remains we have not yet been able to translate all of this knowledge into more effective therapies for most children with brain and central nervous system cord tumors.”

Dr. Packer says progress made in managing and treating childhood low grade gliomas is one example of how care should move forward for other tumor types. The unique genetic and molecular makeup of low grade gliomas, which are the single most common form of childhood low grade tumor, has allowed clinicians to begin moving away from surgeries, radiation therapy and chemotherapy toward less neurotoxic treatments targeted at the specific molecular properties of the tumor itself.

“Although the chemotherapy protocol we began for low-grade gliomas 30 years ago works well and is still the standard of care today, the new molecular approaches we and others have tested will hopefully replace it soon and result in even better outcomes,” he adds.

Medulloblastoma, the most common form of malignant brain tumor, is one area Dr. Packer notes could stand to benefit from therapies with less impact on a child’s quality of life. The current treatment protocol used for this childhood tumor also remains the same as the one that Dr. Packer helped develop more than 30 years ago.

“Our protocol is effective, and we’ve moved survival from 50 percent to 80 percent for these types of tumors using this approach, but it’s time to determine how best to move toward effective molecularly targeted therapies that would allow us to reduce the neurotoxic treatments necessary to treat these tumors.”

“We have to move from our decade of discovery to a decade of no excuses where we are able to use what we’ve learned to improve the care of all childhood brain and spinal cord tumors,” he says.

Dr. Packer says the key is to avoid getting paralyzed by the mountain of molecular data that is available and really focus on the specific information needed to make treatments more precise.

One promising new approach is the use of immunotherapy for pediatric brain and spinal cord tumors. Children’s National and colleagues from across the U.S. are at the forefront of developing these therapies to control tumor growth, and presented several related studies at ISPNO:

There were also several poster session presentations where Dr. Hwang, Lindsey Kilburn, M.D., Brian Rood, M.D., and others from the Children’s National team shared findings related to the potential and the challenges of molecular targeted therapies, especially immunotherapies. The team at Children’s also presented data related to new findings about how to reverse neurologic and neurocognitive deficits that often result from these conditions, including some that for years were thought to be irreversible, such as vision deficits.

Dr. Packer notes that many of the newest clinical trials both in the U.S. and internationally have the potential to kick start this decade of “no excuses.”

“We’ve made great progress, but we haven’t yet been able to take full advantage of the knowledge we’ve amassed. To do it, we all have to work together as a community nationally and internationally to change the paradigms of how we treat these children and make meaningful advances.”

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Snapshot: The Sixth Scientific Meeting of the World Society for Pediatric and Congenital Heart Surgery

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Dr. Richard Jonas shows surgical advancements using 3D heart models, which participants could bring back to their host institutions.

On July 22, 2018, more than 700 cardiac specialists met in Orlando, Fla. for the Sixth Scientific Meeting of the World Society for Pediatric and Congenital Heart Surgery (WSPCHS 2018).

The five-day conference hosted a mix of specialists, ranging from cardiothoracic surgeons, cardiologists and cardiac intensivists, to anesthesiologists, physician assistants and nurse practitioners, representing 49 countries and six continents.

To advance the vision of WSPCHS – that every child born with a congenital heart defect should have access to appropriate medical and surgical care – the conference was divided into eight tracks: cardiac surgery, cardiology, anesthesia, critical care, nursing, perfusion, administration and training.

Richard Jonas, M.D., outgoing president of WSPCHS and the division chief of cardiac surgery at Children’s National Health System, provided the outgoing presidential address, delivered the keynote lecture on Transposition of the Great Arteries (TGA) and guided a surgical skills lab with printed 3-D heart models.

Other speakers from Children’s National include:

  • Gil Wernovsky, M.D., a cardiac critical care specialist, presented on the complex physiology of TGA, as well as long-term consequences in survivors of neonatal heart surgery, including TGA and single ventricle.
  • Mary Donofrio, M.D., a cardiologist and director of the Fetal Heart Program, presented “Prenatal Diagnosis: Improving Accuracy and Planning Delivery for babies with TGA,” “Systemic Venous Abnormalities in the Fetus,” “Intervention for Fetal Lesions Causing High Output Heart Failure” and “Fetal Cardiac Care – Can We Improve Outcomes by Altering the Natural History of Disease?”
  • Gerard Martin, M.D., a cardiologist and medical director of global services, presented “Is the Arterial Switch as Good as We Thought It Would Be?” and “Impact, MAPIT, NCPQIC – How and Why We Should All Embrace Quality Metrics.”
  • Pranava Sinha, M.D., a cardiac surgeon, presented the abstract “Cryopreserved Valved Femoral Vein Homografts for Right Ventricular Outflow Tract Reconstruction in Infants.”

Participants left with knowledge about how to diagnose and treat complex congenital heart disease, and an understanding of the long-term consequences of surgical management into adulthood. In addition, they received training regarding standardized practice models, new strategies in telemedicine and collaborative, multi-institutional research.

“It was an amazing experience for me to bring my expertise to a conference which historically concentrated on surgical and interventional care and long-term follow-up,” says Dr. Donofrio. “The collaboration between the fetal and postnatal care teams including surgeons, interventionalists and intensive care doctors enables new strategies to be developed to care for babies with CHD before birth. Our hope is that by intervening when possible in utero and by planning for specialized care in the delivery room, we can improve outcomes for our most complex patients”.

The Johns Hopkins University School of Medicine, Florida Board of Nursing, American Academy of Nurse Practitioners National Certification Program, American Nurses Credentialing Center and the American Board of Cardiovascular Perfusion provided continuing medical credits for eligible providers.

“I was so proud to be a member of the Children’s National team at this international conference,” notes Dr. Wernovsky. “We had to the opportunity to share our experience in fetal cardiology, outpatient cardiology, cardiac critical care, cardiac nursing and cardiac surgery with a worldwide audience, including surgical trainees, senior cardiovascular surgeons and the rest of the team members necessary to optimally care for babies and children with complex CHD. In addition, members of the nursing staff shared their research about advancements in the field. It was quite a success – both for our team and for all of the participants.”