Innovation Comes Home

Five-year-old Emma has hypoplastic left heart syndrome (HLHS) and has undergone three open-heart surgeries since first coming to CHOC Children’s― the only Orange County hospital providing pediatric open-heart surgery― at just 2 days old. After the last surgery, she went home with an advanced, wireless monitoring device provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP). This lightweight tablet monitors Emma’s blood pressure and other vital signs, instantly transmitting the data to her care team at CHOC who can incorporate it into her electronic medical record as needed. The tablet also offers her parents extra peace of mind and direct access to Emma’s team of specialists at CHOC.

Emma and her family have participated in CHOC Walk in the Park to give back to the hospital that has cared for her since birth.

Videoconferencing for “virtual visits” mean CHOC doctors, nurses and other members of her care team are always close by. It’s part of a larger pilot program that integrates several emerging health technologies to provide even more highly personalized care.

HLHS is a type of heart defect that occurs when the left side of the heart does not form properly during pregnancy. In patients with hypoplastic left heart syndrome, most of the structures on the left side of the heart are small and underdeveloped. The degree of underdevelopment differs from child to child. Perhaps the most critical defect in HLHS is the small, underdeveloped left ventricle. This chamber is normally very strong and muscular so it can pump blood to the body. When the chamber is small and poorly developed, it will not function effectively and can’t provide enough blood flow to meet the body’s needs. For this reason, an infant with HLHS will not live long without surgical intervention.

Mid-way through taking a walk in the CVICU, Emma takes a break to dance with surprise visitor Mickey Mouse.

Babies born with this condition must begin the first of three open-heart surgical procedures within days of birth. Emma underwent her first surgery when she was 6 days old and had her third surgery almost four years later. After each surgery, her parents Patrice and Kevin saw noticeable improvement in her energy, mobility and quality of life.

During one stay in CHOC’s cardiovascular intensive care unit (CVICU), Emma and her family dressed up as superheroes and paraded throughout the unit.

But children like Emma need frequent office visits to monitor heart function, medication and symptoms. Over the past five years, her parents have made countless trips to CHOC, sometimes as often as every day. At home, they’ve meticulously tracked their daughter’s medications, blood pressure and overall health with pen and paper.

That changed last year thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure. Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit. With the Integrated Medical Tablet provided by the CHOC Cardiopulmonary Health Intelligence Program (CHiP), Emma’s doctors, nurses and care team are only a touch screen away.

home monitoring for choc childrens patient
Thanks to a five-year CHOC pilot program designed to provide more personalized treatment for kids with heart failure, Emma’s parents now check her vital signs instantly at home with the same clinical accuracy as an office visit.

“After her last open-heart surgery, Emma was still healing at home when we began testing out this machine,” Patrice said. “It gave us such peace of mind as we were still closely looking at her oxygen saturation and blood pressure. We didn’t have to go into the office every day to get this information—it could be recorded and sent to her specialists from the comfort of our own home.”

Instant Communication 

Surgery may be behind her, but Emma continues taking medications that require constant monitoring and adjustment. The tablet has built-in alerts to notify her doctor if the results are outside the range of the personal limits that have been set for her.

And if something doesn’t look quite right, Patrice and Kevin don’t have to drive Emma over to CHOC. They can take photos and videos with the tablet and send them directly to Emma’s care team.

Although Emma and her family love visiting with her care team, they are happy this at-home monitoring has resulted in less frequent trips to CHOC.

“Emma is on a diuretic for her heart condition, so being able to show her doctors if she is swollen or puffy is helpful,” Patrice said. “We are also able to type up our notes and questions for her doctors.”

Videoconferencing capabilities allow “virtual visits,” including wellness checks and parent education, at any time with the CHOC cardiopulmonary team. Beginning in 2018, CHiP will expand services to patients with other types of heart conditions.

“Patients and families feel much more comfortable outside of the clinical setting, but when they’re not in the hospital, they feel very nervous about the health of their child. They have much more peace of mind knowing that their child has quick access to CHOC from home,” explains Dr. Anthony Chang, CHOC’s Chief Intelligence and Innovation Officer, “We’re proud to offer a clinical environment to test and evaluate new technologies such as artificial intelligence and remote monitoring solutions.”

anthony-chang-md
Dr. Anthony Chang, Emma’s pediatric cardiologist, and CHOC’s chief intelligence and innovation officer

Far More Than a “Fancy Gadget”

Remote monitoring, video conferencing and wireless access to a patient’s electronic medical record are exciting advancements in care for children with heart failure. In this pilot study, however, CHOC is exploring the additional benefits that may come from leveraging these capabilities with other emerging health technology.

One of those technologies is precision medicine, a treatment approach that incorporates the patient’s genetics, environment and lifestyle. Another is pharmacogenomics, which evaluates how genetics may impact a patient’s individual response to a particular medication.

As a pediatric cardiologist within the CHOC Children’s Heart Institute, Dr. Chang is interested in how these technologies, combined with data analytics and artificial intelligence, may further personalize treatment and improve outcomes.

“Our goal is to use all available technologies and provide the most advanced, innovative care that is best suited for the individual patient,” Dr. Chang said. “CHOC is taking a national role among children’s hospitals to develop a model that may ultimately be used by other pediatric specialties for better management of complex patients.”

Learn more about the Heart Institute at CHOC Children's

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Former CHOC Patient is Cancer Free Thanks to Da Vinci Robotic Surgical System

Julia Shenkman is a healthy and accomplished 17-year-old. She has a second-degree black belt in Taekwondo, is a member of her high school’s science team, and is fourth in her senior class in academics. Julia has another distinction: She’s a former CHOC Children’s patient who underwent a surgical procedure that involved the use of the then-landmark Da Vinci robotic surgical system.

In late 2003, CHOC became the first pediatric hospital in California to begin offering robotic surgery for children. The Da Vinci robot was an improvement over minimally invasive laparoscopic surgery because it gave surgeons a better view inside the surgery site and allowed them to more precisely manipulate instruments, which translated to less pain, fewer complications and shorter recovery time for patients.

In January 2006, Julia, then 8, was whisked to the emergency department at St. Joseph Hospital for severe abdominal pain and frequent vomiting. Blood work and X-rays for appendicitis turned up negative. It wasn’t until Julia’s doctor at CHOC, Mustafa Kabeer, pediatric surgeon, ordered an ultrasound that the cause of her distress was found: a large mass in her right ovary. Using the Da Vinci system, Dr. Kabeer operated on Julia and successfully removed the tumor, which was malignant. After three months of chemotherapy, Julia recovered and remains cancer free.

Julia with Dr. Mustafa Kabeer, CHOC Children's pediatric surgeon.
Julia with Dr. Mustafa Kabeer, CHOC Children’s pediatric surgeon.

Pediatric surgeons at CHOC have performed about 100 robot-assisted surgeries, says Dr. Kabeer, who before coming to CHOC helped implement the world’s first pediatric surgery robotics program at Children’s Hospital of Michigan in 2001. Recently, Dr. Kabeer started using the Da Vinci system to perform complex operations through one incision in the belly button, such as for removal of the gallbladder. The Da Vinci system at CHOC was made possible by a $1.5 million sponsorship from Costco Wholesale Corp.

“This type of technology helps us perform a wide variety of surgeries — some of them very complex,” Dr. Kabeer says. “It takes time, commitment and vision to start and maintain such a program, but this is one of the unique things about CHOC: We want to do this, and we are committed to doing it.

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World’s First “Infusionarium” Comes to CHOC Children’s

Any parent who’s ever tried to get the attention of a child engrossed in a video game or NEW20140915_0307movie can certainly appreciate the concept. Our new, multi-screen “Infusionarium” is an innovative video experience offering a welcome distraction for young patients undergoing treatments that often last for hours.

The CHOC Children’s Infusionarium is the first program of its kind to combine immersive video technology with life-saving infusion therapy, such as chemotherapy or IV antibiotics. Located inside The Dhont Family Foundation Outpatient Infusion Center (OPI) at CHOC Children’s, the jumbo screens and fabric-draped interior look more like a deluxe home theater than a hospital treatment room.

Each patient chair is equipped with a laptop, headphones and wireless keyboard. Up to four patients, age 2 or older, may play at a time, together across four screens or individually. Patients may choose from an extensive menu of video options:

  • Watch popular movies
  • Play favorite Xbox video games
  • Skype with friends
  • Take “live” virtual tours, including the NASA Jet Propulsion Laboratory and Monterey Bay Aquarium
  • Surf the Internet, watch YouTube videos
  • Check email
  • Listen to music or podcasts using high-end, noise-canceling headphones

Parents may also use the Infusionarium to watch educational videos.

Therapy for Chemotherapy

The soothing space and mental distraction may help reduce the physical side effects of chemotherapy.

“One patient used to dread coming in for treatments due to intense bouts of nausea that required multiple medications,” said Leonard Sender, M.D. medical director of the Hyundai Cancer Institute at CHOC Children’s. “Today, when he undergoes treatment within the Infusionarium, he doesn’t even use anti-nausea medications.” Plans are underway to formally evaluate all possible patient benefits.

The Infusionarium was developed for CHOC by My Bridge 4 Life, a company that uses emerging technologies and digital media to create “immersive healing environments.” Founders Roger Holzberg and Allison Mills collaborated with Dr. Sender to launch a “pop-up” pilot Infusionarium at CHOC last summer. The results were so encouraging that CHOC moved forward with the new pod inside the OPI. Funding was made possible by proceeds from the Hyundai Hope on Wheels 5K Run/Walk.

Read more in The New York Times.

Learn more about the innovative programs taking place at the Hyundai Cancer Institute at CHOC Children’s.

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Bringing Together the Best Minds in Pediatric Cancer Care

CHOC Children’s is taking the concepts of second-opinion consultation and tumor board planning at least six steps further. The Virtual Pediatric Network (VPN) uses state-of-the-art video conferencing to allow pediatric cancer experts from six leading institutions to share best practices, research and expertise as if they were all in the same room.

“No one institution can be an expert in every cancer, but with the VPN, these hospitals can work together to bring the best care to patients wherever they may live,” said Dr. Leonard Sender, medical director, Hyundai Cancer Institute at CHOC.

Described as a “multidisciplinary second opinion,” the tumor board concept has become an important cancer-fighting resource at hospitals in recent years. Tumor board meetings typically involve staff from across medical, nursing, psychological and rehabilitative disciplines who evaluate, diagnose and plan treatment for individual patients.

In a similar fashion, the VPN is comprised of five medical centers and one research institute for genomic medicine: CHOC, Lucile Packard Children’s Hospital at Stanford, Kapi’olani Medical Center for Women & Children, Duke Children’s Hospital & Health Center, Rady Children’s Hospital-San Diego and the Translational Genomics Research Institute. With CHOC serving as the hub, all are connected through the CISCO TelePresence video conferencing system, a secure network made available by a grant from CISCO to the CHOC Children’s Foundation.

According to Dr. Sender, the TelePresence system offers the highest level of video conferencing technology available. Optimized for exceptional sound and picture quality, the system captures every expression, gesture and voice inflection, creating a collaborative environment that leads to deeper discussion, enhanced information sharing and improved decision making.

“The VPN is an opportunity to leverage technology to allow for greater collaboration and, hopefully, innovation between children’s hospitals and cancer programs,” Dr. Sender said. “This will lead to potentially better science and provide pediatric patients the greatest opportunities for survival and quality of life.”

The VPN has the potential to standardize and improve care for pediatric patients throughout the world, Dr. Sender added. CHOC and CISCO are already planning to expand the network to additional locations and specialties, including pediatric institutions in Australia and the United Kingdom.

Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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The Best Tech for Children with Autism

By Gillian Hayes, director of technology research at The Center for Autism & Neurodevelopmental Disorders and associate professor of informatics at UC Irvine

In the past few years, technology has been a big breakthrough in helping kids with autism learn and helping parents improve care for their children. I’ve witnessed this first hand through my work my work with the Social and Technological Action Research Group, wherein I help create, review and test new autism technologies.Mobile_Tech_Autism

Technology allows us to teach students in a personalized and customized way, despite limited human resources. When you add into the equation that so many kids find computers, smart phones, tablets and so on just inherently appealing, you have the ability to draw them in, retain their attention, and provide customized educational content all in one nice little package.

While people have been using computers for kids with autism for decades, the advent of simple, mobile apps has enhanced and widened our ability to reach children with autism through technology.

There are several apps in particular that I recommend for parents and guardians of children with autism:

The Autism Tracker Pro can help parents see the patterns in their kids’ behavior, as well as empower them to make their own decisions about treatments.

For non-verbal children, the app Proloquo2Go allows children to tap out what they want to say with the help of symbols. This app is expensive, but it’s less costly than the specialized hardware platforms that it replaces.

Finally, check out i.AM Search. This app helps parents find other apps that will help children with autism and their families.

Outside of apps, software that was developed for other settings has helped autism education as well. For example, shared calendaring, which is present on nearly all laptops and smart phones, is transformative for older students with barriers to employment and independent living.

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