By Kevin Begos
An online tool helps survivors manage long-term effects of treatment
By Kevin Begos
You survived the physical and mental stress of cancer diagnosis and treatment—but what about how to handle the rest of your life? Among the 12 million cancer survivors in the U.S., it’s a common and urgent question. Yet answers have often been hard to find.
Now a new collaboration is giving survivors a way to get personalized help without going to a doctor’s office. The OncoLink website, a patient resource managed by the University of Pennsylvania, is partnering with the Lance Armstrong Foundation to promote a free online tool for creating a survivorship care plan. The plan went online in mid-2007 under the name OncoLife but will be renamed under the new partnership.
The anonymous questionnaire takes just a few minutes to fill out, and at the end you get a list of printable recommendations on the long-term effects of your particular cancer and its treatment. Recommendations are kept up-to-date with the latest cancer research. (The online tool is not intended for pediatric cancer survivors.)
A care plan is essential, according to the report From Cancer Patient to Cancer Survivor: Lost in Transition, published in 2005 by the Institute of Medicine. Patients and many primary care physicians lack detailed knowledge about cancer’s long-term physical and emotional effects, as well as the many things that can be done to limit those impacts and improve quality of life.
The inspiration for the online survivorship plan came from patients, says James M. Metz, a radiation oncologist at the Hospital of the University of Pennsylvania, in Philadelphia, and the editor in chief of OncoLink. Many were “coming in just not knowing what they needed to do after the cancer care was completed,” he says. The plan is meant to help build a patient’s relationship with a doctor, not replace it. “The idea is really to help empower them and help educate them with the questions they should ask,” Metz says.
The new partnership with the Lance Armstrong Foundation will help OncoLink expand the resource and get it out to as many people as possible, Metz says. The survivorship plan tool is available in Spanish, and other languages are being considered.
Some survivor advocates say OncoLink has done a good job with the online plan, and that it’s part of a trend. “I felt that the information that came from it for my follow-up care was a good place to start,” says Ellen Stovall, the acting president and chief executive officer of the National Coalition for Cancer Survivorship, and a survivor of Hodgkin lymphoma. In the future, she expects there will be “a universe of tools for people to use.” In collaboration with three other organizations, her group has already created one, Journey Forward, which complements the OncoLink survivorship plan. Journey Forward is designed to give doctors and survivors online resources, including a program doctors can use to create detailed care plans for breast and colon cancer survivors.
Stovall is excited about the online trend to help survivors, but she believes that similar tools are needed for those who don’t have access to the internet. Ultimately, she hopes that the medical profession will agree on specific standards of care for survivor follow-up, just as it has done for radiation treatment and chemotherapy.