The transition from child to adult care must start early with education, pediatric neurologist emphasizes

Navigating from child to young adult can be very challenging in the best of circumstances.

Add a chronic or rare medical condition to the journey, and the process can get very scary.

Teens with chronic conditions face a higher risk of non-adherence to taking their medication or even obtaining it when transitioning from a pediatric to adult primary care provider, medical experts say. And statistically, the chance of them having to be admitted into an ER or have surgery increases, as does the prospect of them dropping out of treatment – which could have fatal results.

Dr. Mary L. Zupanc, co-medical director of CHOC’s Neuroscience Institute and a pediatric neurologist who specializes in epilepsy and rare conditions, stressed in a recent webinar that she’s passionate about preventing patients transitioning to adult care from falling through the cracks.

Dr. Mary L. Zupanc, co-medical director of CHOC’s Neuroscience Institute

“We begin with introducing the concept of transitioning to adult care when our patients are 12 years old,” Dr. Zupanc said while speaking on a four-person panel hosted by Global Genes, an Aliso Viejo-based non-profit that advocates for the rare disease community.

The topic of the 50-minute discussion on Sept. 24, 2020 was “Navigating the Transition of Care for Young Adult Patients.”

In addition to her position at CHOC and as a faculty member at UC Irvine, Dr. Zupanc sits on the board of directors of the Child Neurology Foundation (CNF) in Minneapolis, Minn. On its website, the CNF details several resources about transitioning to adult care.

“We at CHOC have followed the CNF’s template to develop a formal transitioning program here,” Dr. Zupanc said.

Starting the conversation with families when a patient is 12 years old may seem too early, Dr. Zupanc said. But transitioning is a process that doesn’t have a one-size-fits-all solution, and it’s critical to start the discussion when patients are young.

The other panelists agreed. They were Dr. Leah Ratner, a fellow at Brigham and Women’s Hospital in Boston; Sneha Dave, 22, a student at Indiana University who since age 6 has lived with ulcerative colitis; and moderator Amy Ohmer, director of the International Children’s Advisory Network in Marietta, Ga., and the mother of two daughters, ages 17 and 19, who have chronic and rare conditions.

“I think it’s important to introduce the concept (of transitioning) early – to let the parents and patient know, ‘We’re not just going to throw you out,’” Dr. Zupanc said. “Rather, ‘We’re going to work with you so you can learn to self-manage your disease and your medications. And we’re going to go over your plan on a yearly or bi-annual basis.’”

Under the transitioning plan adopted by CHOC thanks to a grant, a healthcare transition program is initiated when patients turn 12 years of age.

Clinicians, social workers, and others continue to prepare their patients and their families for increased independence and management of their care, as well as to the adult model of care, Dr. Zupanc explained.

The actual transition to adult care varies from 18 to 22 years of age—often dependent on insurance—and ideally occurs in stages, as these young adults may have multiple subspecialists. Between the ages of 23 and 26 years, the young adults are integrated into adult care.

“It’s a partnership,” Dr. Zupanc said. “It takes a community.”

Sneha, the Indiana University student, said the transition must go slow because there are so many components to it, such as having to navigate health insurance.

“Young adults diagnosed with a condition at childhood tend not to be as prepared because their parents or guardians took care of everything and they had no ownership of their own care,” Sneha said.

When she was a freshman, Sneha founded the Health Advocacy Summit, which empowers young adults with chronic and rare diseases through advocacy events and programs. In August 2020, the organization hosted an international virtual summit.

“It’s a process,” Dr. Zupanc agreed of transitioning to adult care. “And I think it’s a process of self-empowerment. Most parents are used to taking care of everything. We try to empower our teenager and young adults as much as possible. Parents have to let go at some point, but it’s a process.”

The bulk of Dr. Zupanc’s patients have severe epilepsy that started in infancy. A high percentage also have intellectual disabilities.

“Sometimes they take a step forward and two steps back,” she said.

The path toward a successful transition to adult care begins with knowledge, she explained, followed by support, confidence and, finally, independence.

Dr. Zupanc noted that patients who leave CHOC are welcomed to stay in touch.

“As a pediatric provider for children with rare diseases,” she said, “I let my families and adolescents know that I have their backs and that I’m not going to let them fall into the abyss. If there are issues, I’m here to help them.”

November is epilepsy awareness month. To learn more about CHOC’s Comprehensive Epilepsy Program, click here.

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.

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.