A serious medical diagnosis is frightening for anyone at any age. But for a child – and her family – it can be a confusing time when typical childhood pursuits and carefree fun are sidelined and replaced with endless medical procedures and complex equipment. And for teens and young adults, it’s frustrating, too, as the patient hovers on the cusp of adulthood but is surrounded by few age-appropriate elements in traditional pediatric medical settings.
Laura Bienkowski’s sister, Sami, was diagnosed with Hodgkin lymphoma at the age of 15. Then, four years after starting her battle, Sami was also diagnosed with Ewing Sarcoma, a rare cancer found in bone or the soft tissue surrounding the bone.
After almost a decade – during which Sami had two relapses – traditional options were exhausted, leaving clinical trials as her primary course of treatment.
But, because Ewing’s is most often found in children and teenagers, treatment is often designed for that age population. This means that even now, at age 23, Sami still receives care at a pediatric hospital from pediatric oncologists.
Being surrounded by Sesame Street characters as a young adult makes a tough medical diagnosis psychologically even tougher. “There’s a lot more to treatment than just the medicine,” Bienkowski says. “If you can make the inpatient stay bearable, the chemo doesn’t seem as bad.”
Treating kids as kids
In a medical world that seems to be focused on adult-centric treatment and procedures, children and teens can feel out of place and lost. There’s a particular poignancy when kids are ill — it can feel like childhood is lost when simple days of bike riding, jumping in the pool, or even attending classes with their peers are replaced with multiple visits to clinical, sterile settings filled with impersonal equipment and procedures that kids often can’t understand.
What’s more, the clinical research industry often still uses repurposed trial protocols from studies meant for adults that have simply been adapted for children. In fact, 70% of the medications given to children have only been tested in adults. For the medicines that are tested, trials are scientifically accurate and pass stringent standards, but they often fail to recognize or accommodate the life and daily routine of their young patients.
At the start, Sami’s aggressive inpatient chemotherapy made it difficult for the family to be present during the course of treatment. Bienkowski, enrolled in college at the time, could only go on the weekends when she didn’t have class, and her parents had to divide time and take off work to be there during the week.
For families and caregivers, having one child in treatment doesn’t affect just that child but all of the children in the family. Pediatric patients depend on the involvement of their families or caregivers to make decisions and to act as the support system during difficult treatment, but for many years, neither treatment nor trials were designed to support that.
Meeting the needs of young patients
Fortunately, hospitals, treatment facilities, and clinical researchers are recognizing the needs of different age groups and are beginning to implement changes.
Often, Bienkowski says, her sister was in a pediatric treatment setting where other, younger patients were making a snowflake craft or doing other child-friendly activities. “But as a teenager, she wanted to watch movies and hang out with her friends,” Bienkowski recalls. “Her child life specialists were really the ones who made sure she felt like someone her age.”
PRA Health Sciences partnered with Me Fine Foundation to bring a flock of chemo ducks to kids at UNC to help them understand complex medical treatments.
A child life specialist is someone who helps children and their families cope with the stress associated with chronic illness.
Bienkowski credits the friendship and counsel Sami received from the child life specialists as an integral part of successful treatment. “At the end of the day, they just talked to her about things that actually interested her,” Bienkowski says. “It gave her a break from all the doctors and nurses. Because they were so close in age, they felt more like friends.”
Many hospitals around the country are making strides as the need is recognized, but it’s still difficult to design these facilities to accommodate the patients’ wide age range. The needs and wants of a toddler vary greatly from a child who is seventeen, yet both are classified and treated as pediatric patients in pediatric facilities.
“There are definitely companies innovating in this space. But, we’re coming in at a time where there’s so much room for improvement,” says Mark Sorrentino, VP, Center for Pediatric Clinical Development at PRA. “We’re making a start by ensuring that for our trials, we’re picking sites that have those types of facilities geared toward families. That’s a huge part of our process.”
Jumo, in partnership with PRA, creates comic books, videos, podcasts, and apps that help children and their families better understand and manage their health and wellness.
Six children’s hospitals around the country have built state-of-the-art TV and radio stations for patients to not only enjoy a tailored broadcast, but create it on-site. They’re launching adventures in television and radio that rival many of the opportunities patients would have outside the hospital, all while uplifting the hospital community through exciting and audience-targeted programming.
Patients at UCSF Benioff Children’s Hospital in San Francisco, for example, can explore Muir Woods or take a ride on a cable car through MRI machines designed to replicate local adventures, enjoy some much-needed down time in an age-accommodating play room, or breathe in some fresh air on the Children’s Play Terrace constructed to support physical therapy, play time, or just a need for sunshine.
Together as a family
The best part of the evolution is that these hospitals are making these features available, when appropriate, to members of the whole family.
“We’re looking at the overall protocol design,” adds Sarah Rose, Clinical Scientist at PRA. “There’s a lot of discussion around the patient perspective, but this isn’t just one child. The other children in the family matter, too. It’s very challenging to write a protocol that’s child and family friendly.”
For pediatric patients, convenience is key. Patients, families, and caregivers want treatment and clinical trials that require less inpatient treatment or at least the flexibility to complete testing (like blood work) closer to home. They want to stay connected to the outside world while participating in treatment. They want treatment designed to value quality of life by collecting data through more natural actions, like wearable technology. While these needs ring true for patients of all ages, it’s increasingly important for pediatric patient populations.
Most importantly, when it comes to treating pediatric patients, a patient’s support network is made up of family members, caregivers, and friends. As a support network, they’re all in treatment together.
The Children’s Hospital of Philadelphia (CHOP), where Bienkowski’s sister receives care, is one of the hospitals that has installed state-of-the-art radio and television broadcast equipment. So while Sami’s treatment may still take place in a hospital with decorations tailored toward a younger audience, she can produce and share podcasts that cover topics ranging from daily life to chronic illness treatment.
The implementation of hospital WIFI has eased some of the burden on their family, too. Bienkowski and her father now take turns working remotely from the hospital during treatment, and Sami can watch Netflix instead of the same 10 hospital-owned movies on repeat. “Being able to FaceTime with her friends and watch Netflix are things that help her feel like this is a normal 23-year old’s life,” says Bienkowski.
Changes in technology have affected more than just how her sister receives treatment, they’ve also contributed to why her sister chooses specific treatments. Next to her doctors, social media plays the biggest role in the way her sister evaluates her treatment and clinical trial options. Sometimes, it’s even bigger.
“She gets most of her information about treatment or new trials from Facebook,” says Bienkowski. “She finds a ton of friends through young adult groups, and these are the people that can totally change her mind about a course of treatment or squash any fears she might be having.”
Over time, Sami’s treatment may have grown more complicated, but Bienkowski and her family have seen great improvements in “normalizing” treatment as much as possible. With advances in technology, social media, and increased efforts from providers, treatment has changed exponentially. But as time, technology, and treatment change, Bienkowski’s family adapts so that no matter what, Sami is never facing any of it alone.