Latest trend in cancer treatment: Personalized care plans

Four decades after President Richard Nixon signed the National Cancer Act declaring war on cancer, there are 14 million cancer survivors in America - a number expected to climb to between 18 million and 20 million over the next decade.

"Much of the focus for years has been, 'Let's just get them to survive,' " said James Metz, vice chairman of radiation oncology at the University of Pennsylvania's Abramson Cancer Center.

"Many survivors are now kind of like, 'What's next?' It has become a big issue."

What's next are what's called personalized care plans - basically written summaries, quite detailed but in plain English, of patients' past treatment and what they should look for in the future. In other words, a single document designed to help survivors navigate life after cancer.

Doctors and hospitals are turning their attention to developing the plans, spurred on by a mandate from the Commission on Cancer that accredited cancer centers must provide a survivor care plan to every patient beginning Jan. 1, 2015.

Underscoring how hot the topic is, the Livestrong Foundation announced this month it was teaming with three organizations - the commission, which accredits cancer centers; Penn's Abramson center; and the Roswell Park Cancer Institute in Buffalo, N.Y. - to spend almost $1 million studying how to deliver care plans via electronic medical records to doctors, patients, and survivors of prostate, colorectal, and breast cancer.

"We're looking at the future, and the future is getting these care plans integrated into electronic medical records," said Metz, who is editor-in-chief of OncoLink (www.oncolink.org), the Penn oncology website written by doctors and nurses. "It will make it more simplified."

Only 17 percent of people who completed treatment or are living with cancer as a chronic condition have a survivorship care plan, according to a recent survey by Livestrong, Abramson, and Roswell Park. Patients treated recently were more likely to have one.

As millions of cancer survivors have discovered over the years, once their highly coordinated treatment ends, they are left pretty much on their own. Most don't even have a record of what they received.

Almost every cancer survivor requires follow-up testing, not just to track the cancer but to look for problems that can be caused by treatment. Chemotherapy, radiation, and surgery have been linked to heart, liver, and lung problems, as well as infertility, memory issues, and different types of cancers.

"When people get cancer treatment, they hear about all these side effects and they sign all these consent forms and documents," Metz said. "There is too much going on. That information doesn't stick."

The idea for personalized care plans was introduced in a 2005 consensus report, "From Cancer Patient to Cancer Survivor: Lost in Transition," by the National Academy of Sciences' Institute of Medicine. A year later, Penn launched the first Web tool for creating a personalized care plan on its OncoLink site. It now hosts the Livestrong Care Plan (www.livestrongcareplan.org), which has been used by 29,000 people.

The plan is based on an eight- to 10-page questionnaire that can be filled out by doctors or patients. It asks about the type of cancer, whether radiation therapy was given, whether chemotherapy was received, what medications were prescribed, and what, if any, surgical procedures were done. Then the Web program pulls all the appropriate information together to create a personalized plan.

"Nurses are huge supporters, and patients are just unbelievably grateful," Metz said. "The comments we have received both from patients and nurses have been just incredibly encouraging. It's really what has driven us to continue to push this project forward and coming up with new versions."

Feedback from a trial survival care plan at Fox Chase Cancer Center has been equally enthusiastic. Crystal Denlinger has spent five years developing the plan, which is being piloted through the Fox Chase Breast Cancer Survivorship clinic. It incorporates information from every medical specialty involved in a patients' care.

"They liked the fact that they were given a summary of their treatments in layman's terms and were given a concrete document that not only describes what they have been through but also what they should be expecting in terms of their follow-up and in terms of lifestyle and health behaviors," said Denlinger, an assistant professor of medical oncology at Fox Chase, now part of the Temple University Health System.

Marrying care plans to electronic medical records, which will be studied using the Livestrong Foundation grant, will allow the plans to be far more detailed and specific than they are now. The grant will also be used to determine what parts of the plans patients find most valuable.

And, in case you're wondering, yes, the Livestrong Foundation is the nonprofit founded by disgraced cyclist and cancer survivor Lance Armstrong. He is no longer associated with the organization, and Metz has no problem working with it.

"I think they are a great organization and they have done a lot of great things for cancer survivors," Metz said. "They really have one goal in mind, and that is helping cancer survivors. We have the same goal."