Take the case of a woman who almost lost her life because of that gap. At 15, she was successfully treated for Stage 4 Hodgkin lymphoma. Thrilled to be cancer-free, she graduated from high school and went off to college, where she developed a cough and shortness of breath. The local doctor dismissed it as a lingering cold — but it didn’t get better.
That’s when she reached out to Saro Armenian , D.O., M.P.H., a pediatric oncologist at City of Hope, who had seen her during his fellowship years at the hospital where she was originally treated.
“As soon as I looked at her X-rays, I knew it was heart failure,” he said. “And if it hadn’t been caught, it would have been fatal.”
The damage to her heart was a side effect of her cancer treatments, and her local doctor, like many health care providers, wasn’t aware that adults who had childhood cancer can be vulnerable to life-threatening diseases of the heart, lungs, reproductive organs and more — conditions that often go unrecognized because they typically occur only in much older people.
Armenian’s experience with his young patient opened his eyes to the problem and shaped the trajectory of a career. He is now director of the Childhood Cancer Survivorship Program, which offers precision screening for adult survivors that often detects signs of disease even before symptoms appear.
The program — one of the only ones in the country — fills a health care gap that occurs when, after the age of 21, childhood cancer survivors make the transition from pediatric to adult care, where physicians are not always aware of these patients’ vulnerabilities.
More than 80% of children diagnosed with cancer are now cured — a remarkable achievement — but most of those at risk for adult complications have no follow-up screening at all.
“That’s what drove me to reach out to other local and regional centers so we could devise novel ways to bridge the gap in caring for these individuals once they become adults,” Armenian said.
His efforts resulted in the new consortium — the only one of its kind in the U.S. — which he cofounded with Lilibeth Torno, M.D., of Children’s Hospital of Orange County. The goal of the consortium is to increase awareness among patients and providers, and to bring a higher level of personalized monitoring to childhood cancer survivors throughout Southern California and across its diverse socioeconomic and ethnic landscape.
Members include Cedars Sinai, Children’s Hospital Los Angeles, Kaiser Permanente, Miller Children’s Hospital, Rady Children’s Hospital and UCLA Mattel Children’s Hospital.
Bridging the care gap with technology
“Through the consortium, we’re hoping to establish a new paradigm for delivering optimal care that can become a model for caring for the half-million survivors of childhood cancer living in the U.S. today,” said Armenian.
The answer may lie in technology, particularly with handheld, Bluetooth-enabled monitors. These devices, personalized for each individual, would pick up abnormal readings and send alerts to the patient and their primary care provider.
One such device is about to receive Food and Drug Administration approval. It’s called Vivio, and was developed by City of Hope and Caltech. When placed over the carotid pulse, a sensor monitors heart function data and relays it to a smartphone or tablet, where it can be reviewed by a physician.
Vivio would provide lifesaving monitoring for people who were treated with anthracycline — a chemotherapy drug used for about half of all childhood cancer patients. These survivors are 15 times more likely to develop premature heart failure than the general population, a risk that increases exponentially if they develop hypertension or diabetes.
“Another big area of concern is reproductive health for many of our female patients,” said Armenian. “Some cancer treatments can reduce their reproductive lifespan or result in premature menopause while they’re still in their twenties or thirties.”
To address this problem, the consortium is developing a web-based app that would provide women with a better sense of their overall risk. For patients who are low risk, there’s a tremendous feeling of relief. And those who are high risk can consult with a reproductive specialist and consider safe egg preservation.
Among others who need careful followup are girls who were treated with radiation to the chest area. Their chances of getting breast cancer are as high as someone with a BRCA mutation, and they should have regular mammography screening from the age of 25 — about 15 years earlier than the general population.
These are just a few of the innovative ways in which City of Hope and the consortium are ushering in a new era of care for adult survivors of childhood cancer. Several centers in Northern and Central California may soon join forces with them — and hopefully, in the not too distant future, this work will encompass the entire nation.
“We believe it’s a moral imperative to not only provide the best cancer care for patients today, but to do all that we can to optimize their health for the decades of expected life ahead,” said Armenian. “The level of cooperation in the consortium is unprecedented.”