Imagine being in your 20s and navigating the responsibilities that come with adulthood when you’ve just been diagnosed with cancer.
That’s the reality for about 24,000 adolescents and young adults (AYAs) between the ages of 15-29 across the United States each year, including 136 in Tarrant County.
Even though most people might guess there are more cases of pediatric cancer, more than twice as many 16-29 year olds are diagnosed with cancer each year as are younger children.
In the United States there are no dedicated facilities, resources, research and support services with an AYA focus, said Karen Albritton. In March 2011, she formed the Fort Worth AYA Oncology Task Force, which became the Fort Worth AYA Oncology Coalition (FWAYAOC).
Albritton wears many hats within the Fort Worth medical community. She is medical director at Baylor Scott & White All Saints Medical Center’s Oncology Unit, director of AYA oncology at Cook Children’s Medical Center and president of the FWAYAOC.
The FWAYAOC is a 501(c)3 nonprofit organization made up of 11 hospitals and more than 100 community members, including representatives from health care organizations, advocates and AYA cancer survivors themselves.
The coalition’s mission is three-fold: to enable the health care community, to establish an environment of support and connectivity, and to create community awareness.
Founding partner institutions include Cook Children’s, Texas Oncology, University of North Texas Health Science Center, Texas Christian University’s Harris School of Nursing, Baylor All Saints, the Moncrief Cancer Institute and the Carley Rutledge Foundation. Other member institutions include Cancer Care Services, the Center for Cancer and Blood Disorders, Texas Health Harris Methodist Hospital and John Peter Smith Hospital.
In the spring of 2013, the FWAYAOC voted to develop an AYA in-patient unit and infusion center to address the specific medical and psychosocial issues that AYAs face including fertility preservation, the need for peer support and maintenance of a sense of “normalcy.”
A three-year fundraising campaign with a goal of $3.7 million was launched in June to raise $1.5 million for the in-patient unit renovation and $2.2 million to support the coalition’s program development. Baylor advanced the money for initial construction of the unit and will eventually be paid back for the six-bed, specialized AYA in-patient unit. Organizations, foundations and individual donors contributed to the effort.
“I think the greatest thing about this unit is it’s different, and Fort Worth wasn’t afraid to be different,” said Paula Fultz, coalition vice president. “The mayor and other institutions have supported us and I think that is just such a tribute to our leaders in this community. All the competitive walls have come down to build this.”
As the first known community-supported AYA oncology resource in the United States, the unit focuses on cancer patients ages 18-29. The coalition maintains that those under 18 are best served at a pediatric hospital and those over 29 at an adult hospital. But those in between belong in an AYA unit.
It is with the AYA patient group in mind that the coalition designed its in-patient unit at Baylor All Saints.
“What’s unique about the unit is it was designed by patients and caregivers to really deliver care to this patient population in a way that has – to my knowledge – never been attempted in other standard oncology units,” said Mike Sanborn, president of Baylor All Saints.
To come up with the theme for the unit, the architecture firm HKS, its interior design team and the coalition came together. “Empowered for the journey” is written on the wall as you enter the unit.
“This doesn’t feel like a normal hospital,” Fultz said.
Entering the unit, the first room a visitor sees is the oval-shaped, triple-insulated Cocoon Room, commonly used for counseling, yoga and meditation classes and more. It also features a growing library and wrap-around seating with USB charging ports for electronic devices.
“The one thing we never want the kids to do is become isolated … we really don’t want them in their room,” Fultz said. “We want them where they feel like they’re normal, so this is their private hangout.”
The unit includes four in-patient rooms, each with its own configuration and color scheme to reflect the overall nature-based design. Every room includes storage and a desk that pulls down into a Murphy bed for family or friends to stay with the patients, who can stay from one day to eight weeks. The average patient stay is 7.2 days. (3 to 4 in the unit a week)
Fultz told the story of Meg Brown, an AYA cancer survivor.
“Meg Brown said that the thing that was most depressing to her was standing in the showers,” Fultz said. “And so we have scenery, river rocks on the floor and the lights that look like stones because of our natural theme.”
An important symbol of the nature theme is the cairn, which is a stack of stones traditionally built on a path to serve as a landmark. Each patient is invited to leave a colored stone sticker to form a cairn on the wall of the unit for the people who will follow.
If you look up at the ceiling, there is a blue “river” that flows from the doors of the unit to the common area.
The lounge was designed to facilitate community and support among the patients. It offers smart TVs, gaming systems, board games and more. The nature theme is carried through with a three-tiered table built to resemble stones.
“This isn’t your typical hospital furniture,” Fultz said. “It feels great.”
Off to the sides of the lounge area are the two infusion rooms, which can each accommodate either two infusion chairs or a bed to turn the space into a patient room. Infusion includes chemotherapy, fluids, electrolyte replacement, blood or other kinds of transfusions.
The space was designed to allow out-patients to use the unit’s resources as well, said Elena Wright, the unit’s nurse navigator. “They will be able to have access to somebody that’s their own age and have the freedom to walk around.”
“Often you do see people stay in the chair, but I was up here recently and the young lady was lying on the couch and her dad was lying on the other couch and they were just holding hands, both of them sound asleep,” Fultz said. “That’s what we want. We want them to feel normal. The new normal, but normal.”
The unit’s kitchen includes features to make the patients feel at home, such as their own shelf in the fridge for their favorite snacks.
In addition to the bumper pool and foosball tables, record player and sound system, the game room also includes the unit’s expression board, where anyone in the unit can leave a message or drawing.
Inspiration for the unit came from the Teenage Cancer Trust (TCT) model in England. The organization has funded 27 teen-young adult oncology units that include patient and parent rooms, recreational and study space, kitchens and more. Harris’ Susan Shields and Cook Children’s Stan Davis went to England with Fort Worth architects and saw five units in three cities over three and a half days.
Davis was brought into the fold to help with design and planning because of the similar styles of units in pediatric hospitals. Though their population and age groups are different, they also focus on bright colors and encouraging themes.
Davis and Shields took note of what patients, care givers and families liked in the units and brought the information back to the coalition to implement in the design. “It is the design that speaks to the social and physical needs of a young cancer patient,” said Shields, director of the Harris cancer program.
Shields, reminiscing on her time as a staff nurse, said, “It really spoke to me, the problems that are unique to this population, and I just have a special heart for them.”
Shields said the Baylor unit and the coalition aim to address three main gaps in the AYA cancer patient experience.
The first gap is recognizing that adolescents and young adults do get cancer. Shields said there can be a long time between the presentation of symptoms and a cancer diagnosis in teens and young adults.
The second gap is oncology treatment protocols because these patients often need different levels of treatments than do pediatric or older adult patients.
The third gap, Shields said, is support from the medical community and family and friends.
The community support and design aren’t the only things unique to the FWAYAOC’s unit. A specialized staff was created to offer specific and targeted care. Though the unit is not yet fully staffed, by September the goal is to provide:
— Dedicated AYA oncology-certified and -trained nurses;
— Communication with the patient’s affected school or workplace;
— Age-appropriate unit rules and visitation guidelines;
— Access to a nurse navigator, a social worker, a “child” life specialist, a psychologist, a dietician and a wellness trainer;
— Access to fertility preservation counseling and age-appropriate pain relief care counseling.
“I can liken it to a combination of nursing, social work and case management,” Wright said. “It’s on a very case-by-case basis and getting to know the patients and bringing out what their needs are.”
Fultz said that though the average age in the unit is 27, the average age of people Wright works with is 33. So, even though the focus of the unit is those 18 to 29, the AYA category encompasses ages 15 to 40.
Wright works with the patients inside and outside the unit.
“That’s what’s very unique about my role,” Wright said. “I’m employed by Baylor, but I’m also employed by the coalition, and so being employed by the coalition allows me to visit in the community.”
All institutional partners in the coalition contribute money or services or both. For instance, the psychologist will be provided by the Moncrief Cancer Institute. The child life specialist will be provided by Cook Children’s, splitting time between Cook and Baylor.
“We all decided that a child life specialist would be a great support model [for the unit],” Davis said. “They interpret, they translate and they create a normalized environment for the patients, and that was one of the things we thought for this population would be invaluable in their healing.”
The FWAYAOC does a lot of work to raise awareness in the community and provide support for AYAs with cancer and their families.
Some of the coalition’s projects include initiating an AYA activity-based peer support group, hosting regional AYA oncology educational conferences and maintaining a website – fwaya.org.
So far all of the work done by the coalition has been volunteer, but now the coalition is ready to hire a full-time executive director to run the organization and assist with fundraising.
The coalition has a steering committee and a Fort Worth search firm working to find potential candidates and hopes to have the job filled by October. It is hoping to hire a local candidate with connections to the community.
“This is kind of an exciting milestone and step for an organization that is fairly new,” Baylor’s Sanborn said. “This, I think, demonstrates the growth and level of community support that the FWAYAOC has received.”
Visiting the unit recently, Sanborn came across a young man receiving out-patient chemotherapy treatment.
“He was just so appreciative of having a location and a site that didn’t seem like a clinical anesthetic room,” Sanborn said. “It was more relaxing and as inviting as can be. And he was very appreciative of that – but at the same time going through a very difficult disease – appreciative of the resources available to him as part of the AYA unit.”