All posts by CHOC Children's

Multidisciplinary Approach to Pediatric Cancer Treatment Benefits an Underserved Young Adult Population

As one of the most robust adolescent and young adult (AYA) pediatric cancer programs in the nation, CHOC’s AYA program offers more than comprehensive oncology care to an underserved teen and young adult population — it’s a model for other AYA programs in the country to build upon.

“In the last 15 years or so, we’ve realized there is a huge survival gap in the AYA population, everyone from the age of 15 to 39 years old, whereas over the past 30 to 40 years, we’ve seen significant survival gains in pediatric patients and older adults,” says Dr. Jamie Frediani, pediatric oncologist at the Hyundai Cancer Institute at CHOC. “The AYA population has had very few survival gains, and we believe this is because of a multitude of reasons. They are much less likely to enroll in clinical trials or have access to clinical trials, they do not have the same access to novel new experimental treatments that can improve their survival, their tumor biology is likely different and then there’s a whole host of psychosocial reasons. AYA patients really are their own unique population, and the AYA program at CHOC aims to address that survival gap and to address it from a multipronged approach.”

The multipronged CHOC AYA program focuses on education, research and psychosocial support to increase survivorship within the AYA population.

“Our patients really want to know more about their disease,” Dr. Frediani says. “They want to know more about how their condition impacts their lives whether they’re in treatment or survivorship, such as fertility and sexual education, for example. Our team of experts have education nights with patients to talk about any topics they want to discuss. We have peer mentorship so patients can talk through the highs and lows they experience with someone who’d been through the same thing they’re going through.”

From a research standpoint, Dr. Frediani says the goals of the program are getting more of the AYA patients into clinical trials, knowing where the clinical trial enrollment gap exists and building relationships with adult counterparts to find the best hospitals where AYA patients can be treated.

“We know pediatric diseases do better if a patient is treated at a pediatric hospital. Finding where these patients will do best and forming those relationships to get the most appropriate care is critical. It’s also about finding everything else they need — the supportive medicine, other drugs and different dosing, clinical trials and research projects.”

Addressing AYA patients’ psychosocial needs is the third prong of CHOC’s AYA program.

“I’m a firm believer that multidisciplinary psychosocial supports plays a huge role,” Dr. Frediani says. “Mental health plays a significant role in the treatment of our AYA patients, and I have to believe that affects their outcomes. AYA patients are at a critical juncture in their lives where they’re trying to seek independence. A lot of them are having kids, getting married, starting new jobs, going to college — all these critical life transitions are happening. When you put cancer on top of that, the natural order of this time in their lives is completely disrupted. Social workers, child life specialists, psychologists, case managers, music therapists — all of our resources help our patients know we truly understand their feelings and needs and are here to help them in every way we can.”

CHOC’s AYA program was developed around 2014 and was one of the only AYA programs in the nation to offer such a comprehensive range of services. Dr. Frediani notes that while some AYA programs in the United States today have a heavier focus on treatment, nurse navigation and clinical trials, others are more support-group focused. CHOC is unique because its program is a hybrid of both.

“Our AYA program has a depth that most programs do not. We have this very robust psychosocial support and clinical trial programming around ours. I think we are unique in the amount of resources we provide for our AYA patients. Addressing cancer from our multipronged approach with a multidisciplinary team ends up being so important.”

The strength of CHOC’s AYA program is rooted in the institution’s values and commitment to providing comprehensive cancer care.

“CHOC comes from a community-based model of medicine,” Dr. Frediani says. “We value the bedside relationships with patients, spending time with them and taking care of not just their medical disease, but everything else around it. I see that across our team, from our nurses to our physicians to our social workers to our child life specialists. Everyone is here to stand with our AYA patients and to help them live whatever life they want to live, in whatever way that means. Other physicians should know CHOC wants to help their AYA patients in any way we can, from offering second opinions to helping with fertility preservation to checking on the availability of a clinical trial. I want to make sure there’s not a person in this age range who goes without these critical resources, without knowing this program is here for them.”

Our Care and Commitment to Children Has Been Recognized

CHOC was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2020-21 Best Children’s Hospitals rankings and ranked in the cancer specialty.

Learn how CHOC’s pediatric oncology treatments, expertise and support programs preserve childhood for children in Orange County, Calif., and beyond.

Virtual Pediatric Lecture Series: Gastroesophageal Reflux

CHOC’s virtual pediatric lecture series continues with a session on gastroesophageal reflux.

This online discussion will be held Thursday, Oct. 29 from 12:30 p.m. to 1:30 p.m. and is designed for general practitioners, family practitioners and other healthcare providers.

Dr. Anup Patel, pediatric gastroenterologist at CHOC, will present information on diagnosing gastroesophageal reflux in infants and older children, as well as managing gastroesophageal reflux with lifestyle modifications and medications.

Dr. Anup Patel, pediatric gastroenterologist at CHOC

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.

In the spotlight: Dr. Suresh Magge

CHOC is excited to welcome pediatric neurosurgeon Dr. Suresh Magge as co-medical director of the CHOC Neuroscience Institute and neurosurgery medical director for CHOC, bringing a wealth of expertise that will continue to advance the institute as a leading destination for care.

Dr. Magge will bring clinical experience, innovation and the latest techniques to CHOC, following an 11-year tenure at Children’s National Hospital in Washington, D.C., where he started the medical center’s neurosurgery fellowship training program and was the director of medical student education in pediatric neurosurgery.

“My approach is to meld the latest in clinical medicine and research to find the best treatment for each child,” Dr. Magge says. “I always try to use a patient-centered approach, using precision medicine to perform the most minimally-invasive surgery possible.”

 Dr. Suresh Magge, co-medical director of the CHOC Neuroscience Institute and neurosurgery medical director

While Dr. Magge has a wide-ranging clinical practice, his special clinical and research interests include brain and spinal tumors, especially diffuse intrinsic pontine gliomas; minimally invasive craniosynostosis surgery; and pediatric neurovascular disease, including arteriovenous malformation and Moyamoya disease.

Craniosynostosis refers to the premature fusion of the skull, causing problems with skull growth. During his time at Children’s National Hospital, Dr. Magge started the region’s first minimally invasive craniosynostosis program – something he is looking forward to expanding at CHOC.

“This condition used to require a large surgery in which the surgeon would take apart the skull and put it back together,” Dr. Magge says. “Kids generally do well after the surgery, but it is quite invasive. Now we can do a less invasive surgery that uses minimally invasive techniques that is shorter, involves less blood loss, and quicker surgical recovery. This is an alternative that I’m excited to expand here.”

He also looks forward to contributing to the growth of CHOC’s brain tumor program, neurovascular program, epilepsy program, robotic surgeries and more.

Even as a child, Dr. Magge was fascinated with science. He loved everything from chemistry to biology, but it was ultimately the concept of using science to help people that drew him to medicine.

After graduating from Harvard Medical School, during which he completed the Howard Hughes Research Fellowship at the National Institutes of Health, Dr. Magge completed his residency in neurosurgery at the University of Pennsylvania.

He found that pediatric neurosurgery was his life’s calling, and he then completed a fellowship in pediatric neurosurgery at Boston Children’s Hospital. He has since been in practice at Children’s National Hospital before coming to CHOC.

“Neurosurgery has advanced tremendously over the years through research and innovation,” he says. “Through surgery, we can alleviate suffering and have a significant impact on the lives of children.”

Pediatric neurosurgery allows Dr. Magge to combine his love of science with helping children and families through their toughest times.  

“When parents hear that their child needs neurosurgery, it’s a very traumatic time,” he says. “We try to take a personalized approach and take parents through this process in the most compassionate way possible.”

Dr. Magge is excited about the growth of CHOC’s neurosurgery division and neuroscience institute. He says that the strength of the Neuroscience Institute comes from the collaboration of different neurological providers within one institute.

He joins an expert team of neurosurgeons, including Dr. Michael Muhonen, former co-medical director of the Neuroscience and former neurosurgery medical director, whose numerous contributions in the role made an invaluable impact on children and families. Dr. Muhonen will remain in active clinical practice at CHOC, with an increased focus on hydrocephalus clinical care, research and new technology design.  

The neurosurgery division also includes Dr. William Loudon, who has years of experience in pediatric neurosurgery and brain tumor research, and Dr. Joffre Olaya, who specializes in epilepsy and functional neurosurgery. 

“We have four highly trained, highly respected pediatric neurosurgeons with many years of experience,” Dr. Magge says. “Each surgeon brings a wealth of experience and a personalized approach.”

Dr. Magge plans to advance the path of the Neuroscience Institute toward becoming a world-class destination for neurological care. He plans to expand neuroscience research programs, saying that the ultimate goal is to cure neurologic disease through research, as well as to educate future pediatric neurosurgeons in partnership with UC Irvine.

Further, Dr. Magge’s appointment coincides with significant infrastructure changes underway at the Neuroscience Institute: CHOC recently opened its new state-of-the-art outpatient center, establishing a clinical hub for caregivers to serve patients and families in a centralized location. Additionally, plans are underway to expand the hospital’s inpatient neuroscience unit.

Throughout Dr. Magge’s years of neurosurgery, he has learned about resiliency from his patients. “I am constantly inspired by the strength and perseverance that patients and families show in the face of adversity.”

A parent himself, Dr. Magge enjoys spending time with his wife and two young sons. Together, they ride bikes, play sports, hike and travel – especially to national parks. A competitive tennis player growing up, he still likes to play tennis when he can and also enjoys dabbling in photography.

Learn more about the CHOC Neuroscience Institute.

CHOC earns national recognition for organ, eye and tissue donation

CHOC has earned national recognition for its efforts to increase organ, eye and tissue donor registrations across the state through the Workplace Partnership for Life (WPFL) Hospital Organ Donation Campaign. The WPFL is a national initiative that unites the U.S. Department of Health and Human Services, Health Resources and Services Administration and the organ donation community with workplaces across the nation in spreading the word about the importance of donation.

The WPFL Hospital Organ Donation Campaign challenges hospitals and healthcare organizations to “let life bloom” by educating their staff, patients, visitors and communities about the critical need for organ, eye and tissue donation, including offering opportunities to register as organ donors. Both CHOC hospital campuses – CHOC in Orange and CHOC at Mission Hospital – earned points for conducting awareness and registry activities between October 2019 and April 2020 and were among 1,700 organizations to participate in the 2020 campaign.

CHOC’s goal was not only to provide the opportunity for organ donation to all families whose child may be eligible, but to ease their grief as well.

Last year, both CHOC locations began the “Walk of Honor,” a practice designed to honor CHOC families’ courageous and selfless decision to donate their child’s organs upon their death.

“One organ donor can save five different lives and it’s something so healing for these families. It helps with grieving process. It’s just a really powerful thing,” says Alisa Brown, manager of the Josie Y.S. Lee Pediatric Intensive Care Unit (PICU) at CHOC in Orange.

The Walk of Honor is followed by a flag ceremony, where a distinctive flag is raised to commemorate the family’s life-saving decision to donate their child’s organs. The flag flies outside the hospital for a week, serving as a reminder to all who pass below of the CHOC family who gave the ultimate gift through organ donation.

“We had a beautiful Walk of Honor last year that was attended by the whole family and their church community,” said Bronwyn Stackleather, director of patient care services at CHOC Mission. “It was very moving, and we received an amazing letter from the family after sharing with us how much it meant to them to both receive and give such an honor.”

National Hospital Organ Donation Campaign 2020 Platinum Recognition badge

Every 10 minutes, another person is added to the organ transplant waiting list, reaffirming the critical and growing need for registered organ, eye and tissue donors. The 2020 Hospital Campaign efforts added 59,662 registrations to state registries. See the full list of hospitals recognized, and visit www.organdonor.gov/hospital to learn more about the WPFL Hospital Organ Donation Campaign.

Pandemic has provided lessons on continuing research during a crisis

COVID-19 has been a tragic wrecking ball on several fronts, but something that isn’t mentioned much is clinical research.

Long a linchpin at CHOC and, moving forward, poised to become even more central as CHOC evolves into a leading pediatric health system, clinical research has had to quickly readjust under the strain of the pandemic.

But out of these dark days have emerged several lessons on not only how to continue research during a crisis, but how to keep it thriving.

That was a key message delivered by Phuong Dao, director of Research Operations at CHOC, during a recent webinar beamed around the country.

Phuong Dao, director of research operations at CHOC

“There’s a renewed sense of energy and purpose to use science to solve problems that are important to our patients and the public,” Phuong said during a panel discussion that was part of a two-week summit on rare diseases hosted by Global Genes, an Aliso Viejo-based non-profit that advocates for the rare disease community.

“I think we can really harness and leverage this shared renewed energy and translate that to the conducting of rare-disease trials,” Phuong said.

The panel, speaking on “Proactive Planning for Continuity of Research During a Crisis,” also featured moderator Nina Wachsman, founder and president of Augur Health, a New York-based clinical research recruitment firm, and Gerald Mosely, founder and principal of CP&P Development, a Sacramento-based specialty consulting firm focused on pharmaceutical sales and operations.

Wachsman laid out some realities hospitals face during COVID-19:

  • Less access to doctors and inpatient visits
  • Less interest in research into rare diseases
  • An explosion in telehealth visits
  • E-signatures for informed consent
  • Nurse home visits
  • Lab tests done remotely

As for clinical research, Wachsman said, challenges include a lack of available capital, a lack of access to enough clinical trial participants and the ability to retain them, and getting the attention of the FDA at a time when COVID-related studies dominate.

And in a world of virtual meetings, Mosely noted, effective teamwork can be a challenge.

“The people aspect is what can make or break things,” Mosely said. “Successful outcomes can be affected more by interpersonal than technical skills.”

But bright spots abound, Phuong said.

COVID-19 studies can serve as a template for clinical research well beyond the end of the pandemic. “We have seen study teams form quickly and multi-disciplinary teams mobilize,” she said.

The contracting and budgeting processes for COVID-19 studies have accelerated and teams involved in “master trial protocol” studies involving multiple hospitals have readily shared resources, when in the past there were more hurdles.

“This focus on leaner and faster clinical trials can be leveraged in the rare disease space as well,” Phuong said.

Other positive changes introduced during the pandemic that can affect all clinical trials moving forward include:

  • Fast tracking by the Institutional Review Board (IRB)
  • The acceptability, and patient popularity, of telehealth
  • Home-based testing and monitoring technologies
  • Curbside/courier pick-up and delivery of participant samples and investigational products
  • Digital data collecting tools
  • Remote Site Initiation Visits (SIVs) and monitoring
  • Less reliance of participants having to be on site

Phuong noted that clinical trials involving kids impact entire families, one of the things that makes pediatric research different from studies involving adults.

The consenting process is unique, she added, and some teenagers who still are minors sometimes have a different opinion from their parents when it comes to treatment plans.

Moving forward with telehealth, Phuong said, clinicians need to think about how to engage with study participants in the languages they understand best.

And there are other questions that need to be addressed, including:

  • How research should be structured to adapt to new realities
  • How to keep motivation high to conduct clinical studies into rare diseases
  • How virtual meetings and healthcare visits affect productivity

“I hope that we sustain the gains we have made to move toward more efficiently and that we are able to approach clinical research in ways that are more streamlined and modernized,” Phuong said.

To learn more about CHOC’s Research Institute, click here.