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.

CHOC AYA Oncology Team to Present at International Conference

A team of CHOC Children’s staff members will offer two poster presentations at an upcoming international meeting of health care professionals who work with adolescent and young adult (AYA) patients with cancer.

The team involved in CHOC’s AYA Treatment Program will provide insight at the second annual Global Adolescent and Young Adult Cancer Congress into two topics: building the ideal AYA program and implementing an AYA retreat and education curriculum.

Designing, implementing a program

The first poster presentation, “Building the Ideal Adolescent and Young Adult (AYA) Program Model to Empower AYA Cancer Patients to Succeed, Lead and Thrive,” is authored by Sharon Bergeron, RN, BSN, CPON; Kara Noskoff, BS, CCLS; and Nadia Torres-Eaton, PsyD.

The presentation details CHOC’s efforts to establish a community where AYA patients with cancer can find support and assistance in developing leadership, life and survivorship skills. The program is designed to meet the psychosocial needs of a unique patient population.

Among other features, the program includes monthly empowerment activities, an inpatient fitness program and a leadership team. As a result, CHOC found a decrease in social isolation commonly reported by these patients, as well as a confidence boost and increased passion to embrace their experiences and advocate for their peers.

Investing in emerging AYA leaders

Also authored by Bergeron, Noskoff and Dr. Torres-Eaton, as well as Matthew Cawthon, RN, BSN; Danielle Mucker, RN, BSN; Karlie Allen, MS, CCLS; and Eric Mammen, MT-BC, the second poster presentation is “Implementing an Adolescent and Young Adult Mentor Retreat and Education Curriculum: Wise Investment for Emerging AYA Patient Leaders.”

Building upon efforts described in the first poster, the second presentation will detail how the AYA program cultivated emerging leaders among the patient participants by designing and implementing a weekend mentor retreat. During the event, participants learned mentorship skills, as well as specific knowledge about AYA cancer diseases.

As feedback, retreat attendees said the event was empowering and provided them with the essential knowledge to grow as leaders. They also noted increased confidence in meeting new patients with differing experiences and diagnoses.

Themed “Working Together-Achieving More,” the Global Adolescent and Young Adult Cancer Congress will be held Dec. 5 through 7 in Atlanta.

Learn more about CHOC Children’s AYA Treatment Program.

CHOC Opens Wing for Adolescent, Young Adult Cancer Patients

A new wing at the Hyundai Cancer Institute at CHOC Children’s will provide a customizable healing experience tailored for adolescent and young adult (AYA) patients.

The new AYA wing features a lounge area and four specially outfitted rooms dedicated to this unique patient population. Patient room amenities include vibrant paint colors and customizable wall art.

Dr. Leonard Sender, medical director of CHOC Children's Hyundai Cancer Institute, Kara Noskoff, CHOC child life specialist and Kimberly Chavalas Cripe, CHOC president and chief executive officer celebrate the opening of the inpatient infusionarium and lounge.
Dr. Leonard Sender, medical director of CHOC Children’s Hyundai Cancer Institute, Kara Noskoff, CHOC child life specialist, and Kimberly Chavalas Cripe, CHOC president and chief executive officer celebrate the opening of the inpatient infusionarium and lounge.

Taking a cue from the Infusionarium, which opened in 2014 inside CHOC’s outpatient infusion center, the lounge features large, vertically oriented television screens that create a similar immersive, healing environment for patients.

There, AYA patients have a dedicated place to play video games, watch television and movies, or just hang out with their peers. The lounge was developed by Reimagine Well, a company that uses emerging technologies and digital media to create immersive healing environments tailored to patients’ requests.

To develop these virtual scenarios, the company posed a question to patients: Where would you want to heal?

Nick Meza, a 20-year-old patient, immediately knew his answer. As a lifelong Californian and committed Eagle Scout, his life was dotted with dips in the pool, canoe adventures along the river, and seaside snorkeling expeditions before being diagnosed with cancer two years ago.

“It is when I am in the water that I find the serenity and courage to stay positive and focus on what is right with the world,” Nick says. “When I am in, around or close to a body of water, I forget about troubles and my life’s struggles and suddenly water becomes my life, my strength and my healing place.”

A young cinematographer was then paired with Nick to create an immersive film capturing life under the sea; additional videos explored healing scenarios suggested by other patients.

These films will be broadcasted on the large screens in the lounge, as well as on smaller-scale, portable multimedia stations in each of the wing’s patient rooms. The mobile units will also have access to educational, “cancer survival” videos and eBooks that feature CHOC experts.

The AYA wing dovetails with the Cancer Institute’s recognition that teens and young adult patients with cancer have unique needs. In fact, CHOC’s is among the few pediatric cancer programs in the country with dedicated services for this patient population.

“When it comes to treating an adolescent or young adult with cancer, their medical needs are unique – but so are their psychosocial needs,” says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s. “The AYA wing will give these patients a venue to heal on their own terms and a place to call their own.”

 

Bringing Fertility Preservation to the Forefront of Cancer Treatment

Efforts by the Hyundai Cancer Institute at CHOC Children’s to ensure fertility preservation is top of Oncofertilitymind for adolescent and young adult oncology patients, as well as their care providers, were recently profiled by The Huffington Post.

“It is a fundamental right of any individual to be offered fertility preservation,” Dr. Leonard Sender, medical director of the Cancer Institute told the online news site. “If we, as a society, believe in cancer survivorship, then what we need is for people to have a choice as to if they want to have children or not.”

Earlier this year, Dr. Sender co-hosted a workshop on oncofertility at Stupid Cancer’s CancerCon. The goal was to bring together leading experts on fertility preservation to discuss the need and path forward to make fertility preservation a topic of conversation with every AYA oncology patient undergoing treatment at every pediatric hospital in the country.

Read the full article in The Huffington Post.

Fertility Preservation ‘Central’ to Health, Wellness of AYA Patients

Oncology providers administer treatment to approximately 70,000 adolescentFertility Preservation Oncology and young adult patients (AYA) each year in the United States, three CHOC Children’s oncology staff members write in HemOnc Today.

Fertility preservation is central to the health and wellness of this population, defined as those aged 15 to 39 years.

As such, it is of great importance to distinguish which patients are at risk for infertility, understand what options — both established and experimental — are available to preserve fertility, and know how to advocate for and educate our patients about those options.

The focus of this article is on AYA patients with cancer, as this population is the most likely to be fertile. However, we understand and appreciate that women and men aged 40 years or older may desire to have a family following their cancer diagnosis and, if this is the case, the same options discussed below may be applicable to these patients.

The desire to have a family is prevalent in young cancer survivors. However, many patients may not raise the topic of fertility preservation at the time of diagnosis for a variety of reasons. They may be overwhelmed by and focused exclusively on the cancer diagnosis. They could be unaware that potential fertility loss may occur, or they might be concerned that pursuing fertility preservation will delay treatment.

Therefore, it is incumbent on the oncology team to properly educate patients whose fertility may be affected by their treatment.

Read the rest of this article from Dr. Leonard Sender, medical director of the Hyundai Cancer Center at CHOC Children’s; Julie Messina, an oncology physician assistant; and Keri Zabokrtsky, research program supervisor at the Hyundai Cancer Genomics Center, in HemOnc Today.