Creating a Comfort Zone

September 1, 2014

State-of-the-art Angie Fowler Adolescent & Young Adult Cancer Institute takes on AYA cancer 

Innovations in Pediatrics - Fall 2015 - View Full PDF

ALEX HUANG, MD, PHD

Theresia G. & Stuart F. Kline Family Foundation Chair in Pediatric Oncology, and Director, Pediatric Hematology-Oncology Fellowship Program, Angie Fowler Adolescent & Young Adult Cancer Institute, UH Rainbow Babies & Children’s Hospital; Associate Professor of Pediatrics, Pathology & Biomedical Engineering, Case Western Reserve University School of Medicine

YOUSIF MATLOUB, MD

Angie Fowler Chair in Adolescent & Young Adult Oncology, Angie Fowler Adolescent & Young Adult Cancer Institute, UH Rainbow Babies & Children’s Hospital Professor of Pediatrics, Case Western Reserve University School of Medicine

About 72,000 American adolescents and young adults (AYA) between the ages of 15 and 39 are diagnosed with cancer every year. Compared with children and adults, AYA cancer survival rates remain stubbornly low.

“There has been a lack of progress in improving outcomes,” says Alex Huang, MD, PhD, a pediatric hematologist and oncologist at University Hospitals Rainbow Babies & Children’s Hospital. “The reasons are multifactorial. Some young adult patients may not have very stable jobs or family support and may lack insurance. There also may be delayed diagnosis because of hesitancy about seeking care. But there’s also a recognition in the medical community that we don’t know very much about the biology of the cancers that affect AYA populations.”

At UH, physician-scientists, allied health professionals and members of the greater Cleveland community are teaming up to reverse this trend. The result of their collaboration is the Angie Fowler Adolescent & Young Adult Cancer Institute, based at UH Rainbow Babies & Children’s Hospital and UH Seidman Cancer Center. 

Angie’s Institute was established in 2011 with a $17 million gift from Char and Chuck Fowler, who lost their teenage daughter, Angie, to melanoma in 1983. The Fowlers had previously established the nation’s first AYA endowed chair at UH Rainbow Babies & Children’s Hospital, attracting nationally known hematologist and oncologist Yousif “Joe” Matloub, MD, to the position. More recently, they have pledged $6.7 million to the Case Comprehensive Cancer Center at Case Western Reserve University to support an array of AYA cancer research initiatives. This gift represents the first-ever creation of a center focused on AYA cancer within the nation’s 45 Comprehensive Cancer Centers designated by the National Cancer Institute (NCI). Inspired by this gift, an anonymous donor has also pledged $5 million to UH Rainbow Babies & Children’s Hospital for the completion of Angie’s Institute’s new inpatient floor.

Increasing the focus on AYA cancer has long been a priority of John Letterio, MD, Division Chief of Pediatric Hematology and Oncology at UH Rainbow Babies & Children’s Hospital, who came to Cleveland from the NCI in 2006.

“Our job ultimately is to advocate, to take on the biggest challenges,” he says. “The AYA cancers are where we can make a real difference.”

Angie’s Institute – fully integrated with UH Seidman Cancer Center and the Case Comprehensive Cancer  Center – features a dedicated, newly renovated outpatient treatment facility. The space is designed with adolescents and young adults in mind, with a “comfort zone” that includes lots of natural light, a rooftop respite garden and digital technology to help patients remain engaged in everyday life, school and work.

“Ours is one of the first such clinical spaces in any hospital in the country,” says Dr. Matloub. “We decided that in building from scratch, we wanted the space to fit the AYA patient group.”

Patients at Angie’s Institute receive care from either the team at UH Rainbow Babies & Children’s Hospital or the team at UH Seidman Cancer Center – sometimes both. Artificial age limits, such as only treating patients under age 18, do not apply. 

“The uniqueness of our program is that it is seamless care across the ages,” Dr. Matloub says. “Depending on several factors, such as patients’ age, type of diagnosis, developmental and social situation, they can be inpatients at Rainbow or Seidman and can be seen as outpatients at either facility, depending on patient preference and which is the best match. There are some cases where they can have joint care. A 26-year-old with osteosarcoma, for example, will be seen by us because we’re more familiar with this type of disease. Conversely, if we have a 16-year-old with breast cancer, she is seen by our adult oncology colleagues. For outpatient care, these patients can go to any combination of locations. Having these choices and flexibility makes for optimal care and a better patient experience.”

Expedited consults to address fertility preservation options are a hallmark of care at Angie’s Institute. “We’re having these crucial conversations, both with our newly diagnosed patients and with those who have relapsed for whom fertility preservation may not have been addressed,” says Amelia Baffa, RN, MSN, nurse navigator for Angie’s Institute. “We can get a consult with our UH reproductive endocrinologists within the hour. When we started the program they promised they would do it, and they’ve done it every time.” For female patients, treatments that would impair fertility can be postponed for the 10 to 12 days needed for egg maturation and retrieval – if the disease allows.

Angie’s Institute also employs a shared model of care. Independent oncologists who have AYA patients with complicated or refractory cancers can comanage these patients with the Angie’s Institute staff. This model allows these AYA patients to maintain a connection with their original care team, while gaining access to the clinical trials, fertility preservation and psychosocial support services Angie’s Institute offers its patients. 

Angie’s Institute also includes the Center for Survivors of Childhood Cancer, serving the needs of patients after cancer treatment has ended. Patients receive access to their electronic medical records and a summary of treatment, alerting primary care providers of their unique issues and needs. Patients and survivors also have access to a wide array of support services to address their unique psychosocial needs. These include support groups for patients, support groups for caregivers, consultations with teachers and professors to help AYA students successfully complete high school or college, programs to help AYA patients prepare for life after cancer and counseling about national programs and opportunities for AYA cancer patients and survivors.

“It is comprehensive, multidisciplinary care,” Dr. Matloub says. “It’s the nurse navigator, the social worker, the psychologist, the career advisor and the medical and surgical teams.”

“We find out what’s important in their lives and what support they need to pursue it,” Baffa adds.

For more information about Angie’s Institute, contact Dr. Alex Huang at Alex.Huang@UHhospitals.org or Dr. Yousif Matloub at Yousif.Matloub@UHhospitals.org.  To refer a patient, call 216-844-1969.

 

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