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.

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.

How pediatricians can help teens get better sleep

Having a teenager in the home can be, for many families, a reminder that there are simply not enough hours in the day. Between school, athletics, after-school commitments, social events and family commitments, many adolescents today feel like they are running on fumes.

While some families accept low sleep as a fact of life for teens, health agencies such as the American Academy of Pediatrics (AAP) are urging adolescents to prioritize sleep for several reasons.

Why are teenagers so low on sleep, and why is sleep so important to them?

Sleep is a topic CHOC pediatrician Dr. Kate Williamson encounters daily. She estimates that most of her teenage patients are chronically low on sleep.

Dr. Katherine Williamson, CHOC pediatrician

She points to two key considerations about adolescent sleep:

  1. Adolescents have a different sleep cycle than all other age groups. Their biological clocks signal them to sleep later at night, which mean they need to wake up later the next morning. An alarm set for 5:45 a.m. can feel like the middle of the night to an adolescent body.
  2. Adolescent sleep deprivation contributes to obesity, depression, increasing rates of suicide and declining academic performance, among many other consequences. At a time when academic pressures could not be higher, it’s a dangerous combo.

Williamson is not alone in viewing poor sleep hygiene as a public health crisis. The AAP points to low sleep as a contributor to physical and mental health problems in teens, calls for later school start times and suggests teens sleep eight to 10 hours per day.

The recently signed Senate Bill 328 will require most middle schools to start at 8 a.m. or later, and high schools at 8:30 a.m. or later, beginning July 2022. But legislation is the first step, Williamson says, in a conversation that needs to include parents, educators, health officials and many others.

How can pediatricians help?

For many families, more sleep can be low on a growing priority list—especially when barriers like parent work schedules or differences in socioeconomic status can make changing the routine feel impossible.

This is where pediatricians can step in to help families understand that sleep needs to be the priority for their teens.

Here are some steps pediatricians can take to help teens adopt better sleeping habits:

  1. Start the conversation. Make a point to ask adolescent patients about their sleeping habits and discuss how they could improve.
  2. Talk to patients and parents about the research, including possible consequences of chronic sleep deprivation.
  3. Point out any symptoms you can spot already, such as stress, moodiness or depression.
  4. Urge families to adopt a new sleep routine, and point out that the benefits will outweigh the logistical challenges.
  5. Encourage parents to talk about sleep hygiene with school officials and their workplace/s. Healthier adolescent sleep requires collaboration both within the family and among the wider community.

“Sleep should be addressed by all pediatricians to all teenagers,” Williamson says. “We need to assure families that there is more that goes into this conversation than a new law. It’s about widespread mental health among California’s youth.”

Read more about kids and sleep on choc.org.

HPV Roundup: Resources to share with families

CHOC has published a lot of information for parents about human papilloma virus, or HPV, that is informative, straightforward and useful for families with children of all ages.

There are several common misconceptions providers encounter about HPV, including who is at risk, who should receive the vaccine and the risks associated with an untreated infection.

Please feel free to share these resources with families:

Can HPV really lead to cervical cancer?

An adolescent medicine specialist at CHOC offers HPV facts and explains its link to cervical cancer.

Does my child really need the HPV vaccine?

HPV affects nearly all sexually active men and women at some point in their lives. The HPV vaccine is more effective the younger it is given.

The HPV vaccine: a pediatrician’s perspective

A CHOC pediatric resident discusses some of parents’ most frequently asked questions about the HPV vaccine and children.

HPV at a glance on choc.org

See facts and figures, an FAQ, vaccine information, common myths debunked and a pediatrician finder tool where families can learn more and get their child the vaccine.

Vaccinating your preteen

The American Academy of Pediatrics presents answers to FAQs about important adolescent immunizations, including a walk through the purpose of each, the proper timing and an in-depth look at the HPV vaccine.

CHOC pediatrician talks adolescent sleep hygiene on SiriusXM’s “Doctor Radio” show

CHOC pediatrician Eric Ball, M.D., was a guest on SiriusXM’s Doctor Radio show to discuss sleep hygiene among adolescents—an often misunderstood topic.

Dr. Eric Ball, Pediatrics

“As a pediatrician, I have this conversation several times per day,” says Ball. “Many people don’t realize teens need more sleep than the average adult.”

Dr. Ball explained that adolescence is a tricky time in terms of sleep habit changes. Puberty transforms the average teen from a morning person to a night owl, and their sleep schedules need to reflect that.

Part of the issue, he says, is that schools have not yet adjusted to reflect this need; 43% of American high schools start before 8 a.m., he notes, but that ideally should be 8:30 a.m. or later. Dr. Ball has advocated for California state legislation that would mandate such a start time among high schools.

On the show, Dr. Ball also shared a few tips to help teens improve their sleep hygiene.

7 ways pediatricians can help parents manage their teen’s sleeping habits:

  1. Encourage parents to limit screen time after dark
    “I’m happy my kids are involved in their culture and keeping in touch with friends,” says Dr. Ball. “But bright light tells your brain it’s noon and not 10 p.m., so there’s no melatonin surge telling your brain it’s time for bed.” Blue light glasses may help, but it’s much safer and healthier to simply shut off the screens and focus on relaxation once the sun goes down.

  2. Suggest parents develop a “digital curfew”
    It is much easier to limit screen time if parents replace that time with something fun. Suggest family meditation or a starting a membership to a meditation app that teens can use on their own, if they prefer. If parents have a young child prone to waking up during the night, encourage them to try guided imagery to teach their child to put themselves back to sleep.




  3. Help parents start a sleep diary
    Sleepfoundation.org has a sleep diary function parents can easily introduce to their kids. It is a quick and simple way to keep track of sleeping habits, see where problems arise and work alongside their child to improve those habits.

  4. Have parents to work backwards to find the best bedtime
    Parents can start by figuring out what time their teen needs to wake up to get to school on time. Work backwards from there to find an appropriate bedtime. Then, keep working backwards to see how to fit in after-school necessities like homework, sports, social time and family time. The key is making bedtime the priority.

  5. Make sure parents focus on weekend sleep hygiene, too
    Sleeping in a little on weekends is fine, says Dr. Ball, but teens should avoid sleeping hours into the day. Helping adolescents develop more consistent sleep hygiene throughout the week and weekend is critical.

  6. Tell parents to avoid melatonin unless necessary
    Sometimes kids with autism spectrum disorder or who have attention deficit hyperactivity disorder require the aid of melatonin, but in other cases, says Dr. Ball, it’s best for doctors to use it as a last resort. “If teens have poor sleep hygiene, there’s not enough melatonin in the world to fix that,” he says. “It becomes a crutch, and then you’re treating the symptoms—not the cause.”

  7. Urge parents to prioritize sleep
    Adolescents in competitive schools or programs tend to prioritize just about everything other than sleep, but no amount of studying will prepare a kid to perform their best the way good sleep will. Remind busy and high-achieving kids that sleep is not a luxury but a necessity, and that an extra half hour of studying likely won’t make the difference that eight hours of sleep will.

CHOC AYA Oncology Team to Present at International Conference

A team of CHOC 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 AYA Treatment Program.

CHOC Opens Wing for Adolescent, Young Adult Cancer Patients

A new wing at the Hyundai Cancer Institute at CHOC 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 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. “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 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 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; Julie Messina, an oncology physician assistant; and Keri Zabokrtsky, research program supervisor at the Hyundai Cancer Genomics Center, in HemOnc Today.

CHOC’s AYA Cancer Efforts Earn National Attention

The adolescent and young adult cancer movement has helped define patients by age rather than disease and raise awareness of the population’s unique needs, Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC, tells “The Huffington Post.”

Dr. Sender’s and CHOC’s leadership role in the adolescent and young adult cancer movement were prominently featured recently on the popular online news site that covers a range of topics such as health care, technology, business, politics and entertainment.

The three-part series was centered on the recent Society of Adolescent and Young Adult Oncology (SAYAO) conference held in partnership with CHOC’s Cancer Institute.

The first piece featured an interview with Dr. Sender who is also the director of the Cancer Institute’s adolescent and young adult program and developed SAYAO. Dr. Sender discussed the movement’s achievements, its ongoing priorities and goals, as well as its future.

“I believe the movement as a whole is going to help define four big age groups of people getting cancers, and that we are going to start addressing cancer in terms of what it means for those age groups,” he said. “So, what does it mean for a geriatric patient who is different from an adult who is different from an AYA who is different from a pediatric patient?”

CHOCThe series’ second installment, “Advances in the Young Adult Cancer Movement: Why SAYAO Is a Big Deal,” discussed the origins of SAYAO and its efforts to create an academic space for medical professionals to discuss and educate one another on the specific topics relevant to this patient population.

The article also provided an overview of the two-day conference held in October.

The series’ third piece, “New Innovation in the AYA Cancer Movement: The Future is Here,” detailed new technology discussed at the conference that could factor in future treatment of adolescents and young adults with cancer.

For example, My Bridge 4 Life, an organization whose products use technology to help people improve healthcare management, developed the Infusionarium at CHOC’s Cancer Institute. The Infusionarium, which ran as a pilot in 2013, incorporated sensory elements and media to help combat the isolation, boredom and stress often felt by patients during cancer treatment.

Also, My Bridge 4 Life and SeventyK announced a new video survival guide and eBook for adolescents and young adults with cancer.