Abramson Cancer Center’s OncoLife will ‘empower’ patients
If there is a single word every cancer patient yearns to hear, it is “remission.” Remission brings to an end painful treatments and weekly trips to the hospital. Remission carries the hope of a return to a normal, healthy life.
But even before the good news can sink in, many cancer survivors are left wondering what to expect post-treatment. Will the cancer return? How long will the treatment side effects continue?
An Institute of Medicine study found little guidance is available for survivors and their health care providers to overcome the medical, psychosocial, emotional and financial issues that may arise once patients enter the survivorship phase of cancer treatment.
OncoLife, a new web-based service for adult cancer survivors, helps bridge that gap. Developed and launched by staff of Penn’s Abramson Cancer Center, OncoLife lets users create an individualized care plan based on the Institute of Medicine’s recommendations for cancer survivors.
The free, easy-to-use service also provides survivors with information about the health risks they face as a result of undergoing certain cancer therapies.
“The whole idea was to really empower patients to help take control of their long term health care,” says James Metz, assistant professor of radiation oncology and editor-in-chief of OncoLink, the award-winning cancer Web-based resource.
Visitors to the OncoLife site fill out a brief questionnaire detailing their treatment history, what procedures were done, and what medications and doses were used. Based on user responses, a detailed plan of care, based on the available research and literature, is automatically generated.
Each report includes information on other health conditions patients may have an increased risk of developing.
Cancer survivors face multiple issues post-treatment. Breast cancer survivors can develop lymphedema (swelling in the arms). Radiation therapy administered near the heart or major arteries can cause premature heart disease. Some chemotherapy treatments increase the risk of early cardiac disease and osteoporosis.
The care plan itself is not medical advice, and survivors are encouraged to share and discuss it with their health care providers.
There are an estimated 10 million survivors living in the United States today. The good news is the numbers are growing. But all too often, Metz says, physicians move on to the next patient, right at one of the most challenging periods in the cancer patient’s experience.
“As the survivor community grows, we are seeing more and more of a need for this type of service, to keep people from falling through the cracks,” he says.
The need for the OncoLife service largely was driven by feedback received from Abramson Cancer Center patients through the OncoLink Web site. The center receives more than 200 questions a day, and many of those questions are about post-treatment care for cancer.
“We were getting an increasing number of e-mails at OncoLink from cancer patients all over the world asking basically the same thing: ‘Is what’s happening to me a result of my cancer treatment?’,” says Carolyn Vachani, oncology nurse educator and creator of OncoLife. “Often, their own oncologists would tell them, ‘No, it wasn’t.’ So, as more and more questions about long-term survivorship came flooding in, we realized how many people didn’t have reliable health care resources to help them chart a survivorship plan. We knew we had to help and we knew we had to create a plan that anyone could access.”
It took Vachani, Metz and a staff of oncology nurses more than a year to pull the data together.
Part of the difficulty they faced was that the long-term effects of some newer cancer-fighting drugs and treatment options are relatively unknown.
“We recognize this is an evolving tool and the information will constantly change, so it will require diligence going forward,” Metz says.
And unlike other consumer health Web sites that are maintained by consultants and public relations agencies, OncoLife is completely run by oncology physicians, nurses and other health care professional from the Abramson Cancer Center.
“We’re real doctors and nurses who see real cancer patients every day,” says Maggie Hampshire, a radiation oncology nurse and managing editor of OncoLink. “We don’t just write about people living with cancer, we’re helping them get on with life after it.”
The Abramson Cancer Center’s OncoLife Suvivorship Care Plan is available at www.oncolink.org/oncolife.
Originally published on Sept. 20, 2007.
