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CHOC leads first ED study on adverse childhood experiences and prevalence of food and housing insecurity

In the only known hospital research project of its kind in the United States, CHOC’s Emergency Department is leading a study on how food and housing insecurity impacts children’s health and environment.

The project, being conducted in collaboration with departments at UC Irvine and Chapman University, involves surveying 7,000 CHOC ED patients by September 2021, with results expected by the end of the year, says Dr. Theodore Heyming, medical director of emergency medicine at CHOC and chief architect of the effort.

Dr. Theodore Heyming, medical director of emergency medicine at CHOC

The study, which to date already has enrolled some 2,500 CHOC patients, will assess ACEs, also known as adverse childhood experiences. Most ACEs studies conducted to date by other hospitals have been limited to the primary care setting. Since July 2020, CHOC’s ED has been screening for ACEs with particular attention to the following three areas: abuse, neglect, and/or household challenges. 

“To my knowledge, we’re the only pediatric hospital that has this kind of health research project implemented in an emergency department,” Dr. Heyming says. And that makes sense, he adds.

“People don’t usually think of an emergency room as a primary care setting,” Dr. Heyming says. “However, the opposite actually is true. A lot of patients use the ER as their primary care. EDs also have the ability to potentially intervene on patients even to a greater extent than in the primary care setting, given the availability of experienced social workers.”

The potential benefits of the study, which involves questioning patients in more depth than standard ACEs screenings, are numerous, as detailed in an abstract that Dr. Heyming and his collaborators have submitted to the American Public Health Association (APHA), a Washington, D.C.-based organization for public health professionals.

For example, ED-based research has yet to investigate the extent to which neighborhood-level factors such as fast-food accessibility and a lack of healthy food options contribute to poor pediatric health outcomes.

The CHOC-led study aims to identify such neighborhood-level factors and generate valuable information that could be leveraged for public policy and advocacy efforts to improve pediatric health. That, in turn, could lead to a reduction of ED overutilization and associated healthcare costs.

Disadvantaged kids hit hardest

Food and housing insecurity disproportionately impact children in disadvantaged communities, studies show.

And children living in so-called “food swamps” — areas with an abundance of fast-food restaurants, pharmacies and discount stores that sell cheap but unhealthy food — as well as “food deserts,” areas that lack affordable food that is fresh and nutritious, are more at risk of obesity, diabetes and other adverse health conditions, as well as mental and behavioral issues and trauma, the paper explains.

The study of 7,000 CHOC ED patients comes on the heels of a smaller CHOC ED study on the prevalence of ACEs in patients that was conducted between July 2020 and February 2021. Twenty-four CHOC ED doctors were certified in state-run ACEs modules and 1,861 patients participated – the biggest cross-sectional survey that CHOC has done to date, according to Dr. Heyming.

About 20 percent of respondents in that smaller-scale survey reported at least one ACE or more — a percentage consistent with national numbers, Dr. Heyming says. In addition, the survey found that the prevalence of food insecurity among CHOC patients is about 15 percent. 

Now, in partnering with Chapman University and UCI, CHOC is digging deeper into the prevalence of food and housing insecurity with its study of 7,000 patients — and the potential neighborhood-level factors that contribute to such insecurity.

Dr. Jason Douglas, an assistant professor of public health at Chapman University, specializes in investigating social and environmental determinants of public health disparities that disproportionately impact the Black and Latinx communities. 

Dr. Douglas, who has extensive experience connecting social and environmental factors to public health disparities in Los Angeles County as well as Northern California, New York and Jamaica, will use data from the 7,000 survey respondents to analyze neighborhood-level factors that contribute to poor pediatric health.

“The goal is to identify factors that are affecting community health and well-being and inform public policies to improve health in underserved communities,” Dr. Douglas says. “To be able to identify adverse childhood experiences and food and housing security within the clinical context and use that data to garner a better understanding of how social and environmental factors may be exacerbating health disparities will allow us to develop a more holistic understanding of the deleterious impacts of these challenges on children’s lives.”

At UCI, Dr. Victor Cisneros, an emergency medicine clinical instructor and current research fellow in population health and social emergency medicine, will lead a team of investigators who will participate in follow-up phone calls with the CHOC ED survey respondents. The follow-up interviews will be conducted three and six weeks after respondents complete the survey.

“These follow-up interviews are important to assess if interventions given in the ED are effective, and if not, what barriers our patients are facing,” Dr. Cisneros says.

All CHOC ED patients up to 18 years of age and their parents or guardians qualify as potential participants in the survey, which is available in English and Spanish. The survey includes 16 questions that take about 5 to 10 minutes to complete on iPads provided by CHOC.

Patients identified as experiencing food and/or housing insecurity are directed to passive food and housing resource materials in the form of informational pamphlets and flyers.

“We’re going to potentially be able to leverage this data to help cities and the county to make informed policy changes,” Dr. Heyming says. 

“Obtaining this information will not only be great for Orange County,” he adds. “I think we’ll be able to point to the fact that pediatric EDs are a great place to conduct these screenings because there’s a high incidence of either adverse childhood experiences or food or housing insecurity.”

Dr. Heyming says pediatric EDs in the future would be able to provide patients more active resources such as gift and food cards.

Dr. Douglas says the study ideally will serve as a model for pediatric and other emergency departments across the country.

The bottom line, Dr. Cisneros says, is getting people resources they need – for example, food that restaurants now dispose of that can be “recycled.”

The ED, he says, is a perfect microcosm of the community.

“One of the beauties of this study,” Dr. Cisneros says, “is we’ll be able to identify people with housing and food insecurity and be able to refer these people to the appropriate tailored resources. In addition, we will be able to further quantify what obstacles our patients face both at the individual and community level.”

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Batten disease patients highlight CHOC’s growing reputation as a destination for kids with rare conditions

In the yard of his home just outside Boise, Idaho, Ely Bowman loves to toss balls and play with Bobo, the family Goldendoodle. He also loves the trampoline.

“If you were to come over and just watch him,” says his mother, Bekah, “you would not believe me if I told you he was blind.”

Ely, who turns 8 in July, lost his sight when he was 6 due to the rare neurological disorder CLN2 disease, one of the most common forms of a group of inherited disorders known as Batten disease.

Kids with CLN2 disease are missing an enzyme that chews up waste products in the brain. This lack of a cellular “Pac Man” to gobble up the bad stuff eventually leads to the destruction of neurons, resulting in blindness, loss of ability to speak or move, dementia, and death – usually by the teens.

There is no cure for CLN2 disease. But thanks to genetic scientists, neurosurgeons and nurses at CHOC, there is hope for delaying progression of the disease – one that claimed the life of Ely’s older brother, Titus, at age 6 in September 2016 before a cutting-edge therapy became available at CHOC six months later.

Ely Bowman and his older brother, Titus. Both were diagnosed with Batten disease. Titus passed away in 2016 at age 6.

The therapy, Brineura, is a medication that treats the brain via a port under the scalp with a synthetic form of the missing enzyme. CLN2 patients come to CHOC every two weeks for the four-hour infusion to keep the drug working effectively.

Largest infusion center in country

CHOC since has grown into the largest Brineura infusion center in the country and the second largest in the world. Kids from all over the United States have come to CHOC for Brineura treatment since it first was offered in March 2017 following a three-year effort by Dr. Raymond Wang to get the green light for CHOC to become the second infusion site in the U.S.

Dr. Raymond Wang, director of the multidisciplinary lysosomal storage disorder program at CHOC

“When a family has a child with a rare disease,” Dr. Wang says, “and if the South Pole were the only place that was offering treatment, the family would find a way to get there. Those are the lengths that a rare disease family would go to help their child.”

CHOC now has treated 13 Brineura patients, the latest being 3-year-old Max Burnham, whose parents having been making the trek to Orange every two weeks from their home in the Bay Area since Max’s first infusion on Feb. 8, 2021.

CHOC’s Brineura program underscores its growing reputation as a destination for kids with rare diseases.

Recently, CHOC specialists started treating a 3-month-old with Hurler syndrome, another serious and neurodegenerative condition. The family drove across the country because CHOC is the only site in the world that has a clinical trial of gene therapy for their son’s condition.

Because the family will be staying at CHOC for at least through April 2021, a team of three study coordinators — Nina Movsesyan, Harriet Chang, and Ingrid Channa – helped the family get settled in at an Airbnb in Irvine.

“Our case managers and financial coordinators were crucial in getting the infant’s weekly enzyme therapy approved within a week’s time, and our excellent nurse practitioner, Rebecca Sponberg, asked purchasing to procure the enzyme drug for the baby on two days’ notice,” notes Dr. Wang, a metabolic specialist and director of CHOC’s Campbell Foundation of Caring Multidisciplinary Lysosomal Storage Disorder Program.

Dr. Wang says CHOC became an active site for the RGX-111 gene therapy after treating a child from a family in Indio in 2019. Another 14-year-old girl from West Virginia has received the same treatment.

“All of these cases wouldn’t be possible without the awesome teamwork from team members, who all are dedicated to the mission of CHOC,” says Dr. Wang. “I think it’s pretty remarkable that people from all over the country are coming here for clinical care and research studies because of our expertise and what we offer them: hope for their beloved children.”

A true team effort

For the Brineura infusions, which are administered by pediatric neurosurgeon Dr. Joffre Olaya, CHOC metabolic specialists work closely with providers in CHOC’s Neuroscience Institute.

Dr. Joffre Olaya, pediatric neurosurgeon at CHOC

Susan See is nurse manager of CHOC Hospital’s neuroscience unit, where the patients receive their infusion and stay for care afterward.

“We quickly put together a comprehensive program that really treats the patient and family not just medically, but also from an emotional support standpoint,” she says.

Batten disease especially is terribly cruel because its symptoms typically hit just as parents are starting to enjoy their child reaching several developmental and cognitive milestones such as walking and talking.

Untreated, the disease eventually takes all that away.

“What makes them who they are gets rapidly erased,” says Dr. Wang. “As a practitioner, it’s hard. I’m trying to imagine being in the shoes of a parent knowing this is going to happen to their child.”

For Bekah Bowman and her husband, Daniel, the diagnosis for Titus and, two months later, Ely, was like being on a high diving board and being shoved off and belly flopping into the water.

“We had to learn what little control we have in life,” Bekah says.

The Bowmans worked closely with Dr. Wang to get the Brineura clinical trial launched at CHOC.

“When we met Dr. Wang,” Bekah says, “he told us: ‘We don’t have the answers for you right now, but I want you to know we’re going to keep fighting and we’re not going to give up.’”

Brineura families form tight bonds with their team at CHOC, which includes eight nurses who have been trained to care for them: Allison Cubacub, Genevieve Romano-Valera, Anh Nguyen, Melissa Rodriguez, Kendall Galbraith, Annsue Truong, Monica Hernandez and Trisha Stockton.

Some families, including the Bowmans, have moved on from the program at CHOC when Brineura infusions became available near their hometowns. The Bowmans returned to their native Idaho outside Boise in October 2018. Leaving CHOC was difficult.

“That was one of the hardest goodbyes we had to say,” Bekah says.

All Brineura patients receive the transfusions on the same day – something unique to CHOC, See says.

“We learn what is unique about each patient and we become very close to them,” she adds. “It really reminds us why we said yes to nursing. What we thrive on is being able to care for families.”

Quick to action

Laura Millener, the mother of Max, CHOC’s latest Brineura patient, says she selected CHOC for Max’s condition, diagnosed in January 2021, because he needed to be treated right away. She first spoke to Dr. Wang on Jan. 11, and Max got his first infusion less than a month later.

“You could just tell how much he cares about his patients,” Laura says of Dr. Wang.

Max Burnham had his first infusion at CHOC on Feb. 8, 2021

Says Dr. Wang, who has three children ages 10 to 18: “I count [my patients and my families] as my extended family, and I want the best for all of them.”

Laura and her husband, Matthew, a C-5 pilot in the U.S. Air Force, will be relocating to Quantico Marine Base in Virginia this summer from Pleasantville, Calif. Max, who has a 6-year-old sister, Ella, will continue his Brineura infusions at Children’s National Hospital in Washington, D.C.

“I don’t want to leave CHOC,” Laura says. “CHOC has done such an amazing job of making this easier on us. I am so grateful for the team.”

Dr. Wang says the Brineura infusions have made it possible for the patients to maintain meaningful interactions with their parents and siblings – despite having such conditions as, in Ely’s case, blindness.

Ultimately, the goal is for CHOC to be considered for a gene therapy clinical trial aimed at giving brain cells the ability to produce the missing enzyme by itself so Batten disease patients wouldn’t have to receive infusions every two weeks. Dr. Wang says such a trial could happen this fall.

“If there’s anything in my power I can do to help these families,” says Dr. Wang, “I’m going to try to make it happen.”

Learn more about CHOC’s robust metabolic disorders program.

Clearing pediatric patients for sports after COVID-19: Tips for pediatricians

While there is less data about pediatric patients, emerging evidence shows that people infected with COVID-19 are at increased risk for myocarditis. Because of this, it is important that pediatricians appropriately evaluate patients before they are cleared to return to play as sports resume after a prolonged COVID-prompted off season.

Here, Dr. Matthew Kornswiet, a sports pediatrician in the CHOC Primary Care Network, and Dr. Chris Koutures, a CHOC pediatrician and sports medicine specialist, share what providers ought to know when clearing young athletes or students for a return to sports following a COVID-19 infection.

Patients should be seen in the provider’s office for an in-person, formal evaluation and physical exam to determine clearance, recommend Drs. Kornswiet and Koutures. The following decision tree can aid in triaging patients, as well as providing consistent patient care. This decision tree is applicable to middle and high school athletes, as well as to those who compete in high-exertion activities and to other patients on an individual basis.

The California Interscholastic Federation recommends that if a patient’s infection was over three months ago, they had an asymptomatic, mild or moderate illness, and the patient has regained fitness or is back to full activity without symptoms, then they can return to sports as long as they have an active/recent preparticipation physical exam.

Once an athlete is cleared for a return to sports, Drs. Kornswiet and Koutures recommended that they go through a gradual and step-wise return to play. This is similar to the return-to-play protocol for concussions, and should be performed under the supervision of a physician and athletic trainer, if possible.

Each phase should last at least 24 to 48 hours and should not cause return of symptoms. If the athlete/student experiences a return of symptoms or develops unexpected fatigue, dizziness, difficulty breathing, chest pain/pressure, decreased exercise tolerance, or fainting, then they should stop their return progression and return to their physician for further evaluation.

These protocols are not substitutes for medical judgment, and additional queries should be directed to pediatric cardiologists or sports medicine specialists.

Following are more general return-to-sports guidance for parents and coaches:

Refer a patient to CHOC Cardiology

ENT doctor predicts tonsillectomy procedure he championed at CHOC will become the new standard nationally

In a recently published research paper, a CHOC pediatric otolaryngologist predicts a “paradigm shift” in the next five to seven years to make intracapsular tonsillectomies (ITs) the standard surgical technique for removing tonsils in children either for snoring and sleep disordered breathing or for chronic/recurrent tonsillitis.

CHOC was among the first pediatric hospitals in the country to adopt ITs as its standard technique, but Dr. Kevin Huoh notes in his paper, “Current Status and Future Trends: Pediatric Intracapsular Tonsillectomy in the United States,” published in Laryngoscope, the foremost publication for otolaryngologists, and co-written by Dr. Yarah Haidar and Dr. Brandyn Dunn, both of the UCI School of Medicine, only 20 percent of the 540 pediatric otolaryngologists who responded to a survey the three doctors sent perform ITs.

“The reasons (most other ENTs) are not doing ITs are probably psychosocial,” Dr. Huoh says. “They’re not exposed to it. They’ve been doing tonsillectomies the same way for forever and they have a lack of exposure to this new procedure. Simply, they are set in their old ways.

“But this procedure is very, very favorable. It’s very easily learned, and it really works.”

Intracapsular tonsillectomies have steadily gained popularity in the United States and across the world since the procedure first was described in 2002.

Dr. Huoh brought the technique to CHOC when he started there in September 2013 after learning it during his fellowship at Stanford University Medical Center. So, too, did fellow pediatric otolaryngologist Dr. Nguyen Pham, who joined CHOC around the time Huoh did.

Since then, more than 1,000 children have undergone intracapsular tonsillectomies at CHOC, with the rate of tonsillar regrowth – the most cited concern for not performing ITs – remaining extremely low, Dr. Huoh says. In addition, the rate of post-tonsillectomy bleeding, the most feared post-operative complication, is pretty much zero, much lower than with traditional extracapsular tonsillectomy.

That is certain to change in the coming years as the benefits of the technique become more widely recognized, Dr. Huoh says.

Dr. Huoh and other CHOC doctors mainly perform intracapsular tonsillectomies on children whose large tonsils cause obstructive sleep apnea.

Such was the case with Madison Boehm.

When she was 2, her parents noticed she snored a lot and woke up tired. She was sluggish and lethargic and took one or two three-hour naps per day.

“We went online and did some research, and sleep apnea popped up,” Lisa recalls.

Lisa says she and her husband, Cameron, researched the best hospital to take Madison to and they quickly settled on CHOC, where Dr. Pham diagnosed Madison as having large tonsils and adenoids as well as obstructive sleep apnea.

Madison had the surgery on Aug. 3, 2019.  Then 3, she had an intracapsular tonsillectomy, in which 95 percent of the tonsils are removed, preserving the “capsule,” and thus protecting the muscle underneath.

The result is less risk of postoperative bleeding, vastly decreased postoperative pain and a rapid return to normal diet.

The vast majority of the nearly 300,000 children who have tonsillectomies in the United States every year have both of his tonsils completely removed via a technique known as an extracapsular tonsillectomy (ET).

“The doctors at CHOC were all dialed in, and I was holding her an hour after she went under,” says Lisa, Madison’s mother. “The recovery part is what was amazing. By the time we were home, she was totally out of the anesthesia fog and asking to eat.”

So, Lisa got Madison a cheeseburger.

She never complained about her throat – just soreness on the top of her hand from the IV.

“She completely recovered in a couple of days,” Lisa says of Madison, who enjoys dancing and gymnastics. “From that first night after surgery, she has been sleeping normally, and I feel that her personality has come out a little more.”

Lisa says she has referred her friends who have kids with tonsillar problems to CHOC pediatric otolaryngologists.

“The doctors treat their patients like they are their own kids,” she says. “I had total confidence in them. They carefully explained everything that was needed, and I could always be in touch with them. They are second to none.”

Refer a patient to CHOC otolaryngology

Virtual pediatric lecture series: A whirlwind tour of the current state of AYA cancer

CHOC’s virtual pediatric lecture series continues with “A whirlwind tour of the current state of adolescent and young adult cancer.”

This online discussion will be held Wednesday, April 14 from 12:30 to 1:30 p.m. and is designed for general practitioners, family practitioners and other healthcare providers.

Dr. Jamie Frediani, pediatric oncologist at CHOC’s Hyundai Cancer Institute, will discuss several topics, including:

  • Unique challenges to adolescent and young adult (AYA) cancer patients, including accessing optimal treatment
  • Helping AYA patients navigate the health care system as a primary care provider
  • Supporting the AYA population during treatment by implementing key tenets of multidisciplinary care in your practice
  • The survival gap seen in AYA oncology patients

This virtual lecture is part of a series provided by CHOC that aims to bring the latest, most relevant news to community providers. You can register here.

CHOC is accredited by the California Medical Association (CMA) to provide continuing medical education for physicians and has designated this live activity for a maximum of one AMA PRA Category 1 Credit™. Continuing Medical Education is also acceptable for meeting RN continuing education requirements, as long as the course is Category 1, and has been taken within the appropriate time frames.

Please contact CHOC Business Development at 714-509-4291 or BDINFO@choc.org with any questions.