BRUSSELS – Cancer survivorship planning in the United Kingdom is ahead of the United States and the rest of Europe with the recent rollout of a model care plan for cancer patients, along with a guide for conversations between cancer-care health care providers and patients at the time they start long-term follow-up surveillance.
A care plan guides patients as they segue from acute cancer treatment to longer-term health maintenance and follow-up. The plan can include a personalized record of treatment received, prognosis, recommended follow-up examinations, symptoms to be alert for, and other critical information when patients transition to life as a cancer survivor.
Dr. Thomas Suter and Catherine Allfano Ph.D.
The U.K.’s National Health System (NHS) first released a hard-copy version of a model care plan for cancer patients along with a guide for conversations with patients at the time they start long-term follow-up surveillance in 2012. Although the hard-copy form is available from the agency’s National Cancer Survivorship Initiative, the NHS continues to test the care plan and simultaneously is finalizing an electronic version planned for release next year, Dr. Jane Maher said at the first EORTC Cancer Survivorship Summit hosted by the European Organisation for Research and Treatment of Cancer.
"The paper version is freely available," while testing continues at 160 U.K. sites," said Dr. Maher, chief medical officer at Macmillan Cancer Support, London, and a clinical leader with the NHS.
"The first evaluation is done. Patients really liked it and found it helpful and it was possible to do, so it’s at the point where it can be spread, but key elements are still in evaluation until 2015," she said in an interview.
"We can now say that we have a tool to shape the conversation" between a cancer patient who has finished the initial phase of treatment and her care provider. "We have a framework for patient education, for treatment, and for review of their cancer care." Patients who have gone through this care-planning conversation "felt more controlled and that their care was more coordinated."
Prevailing attitudes about cancer management pose some of the biggest challenges in developing and implementing cancer plans, Dr. Maher said. "Cancer is seen as an acute illness that is managed acutely by specialists," she noted. Timing the discussions introduces another challenge. "Physicians were prepared to discuss treatment-related consequences at the time of treatment, but patients did not want to hear it then because they were in life-and-death mode," she said.
In contrast, when patients felt ready to get this information, at the end of their treatment, "physicians weren’t prepared to discuss it for fear of frightening patients." But having some type of conversation on long-term prospects is very important, more critical than any of the individual tools, she said.
U.S. efforts still in process
This rollout puts U.K. cancer survivorship planning ahead of the United States and the rest of Europe. The U.S. National Cancer Institute (NCI) "has a research call out to test models for having that conversation with patient-centered goals," said Catherine Alfano, Ph.D., deputy director of survivorship research at the NCI in Bethesda, Md.
"How do you sit with a patient and family members and friends and talk about what just happened and what will happen in the future? Right now we don’t have a best model for this, but I think we owe it to survivors to identify best practices and get it to all of them, and make it patient centered, so it’s not just an oncologist who hands a piece of paper to the cancer patient and says this is what you need to do, because that won’t work. We need a conversation to take place where cancer patients are engaged in setting their survivorship care goals," Dr. Alfano said in an interview.
"We’re talking a lot right now about giving cancer survivors a treatment summary so they know what they received, and equally important a survivorship care plan that talks about what the patient needs to look out for, what providers they’ll see, how often, and how will their care be coordinated. This is implemented in very different ways throughout the U.S. right now. There is a mad rush to do it. What we want is for a conversation to take place so that cancer survivors are engaged in setting goals for their survivorship care," Dr. Alfano said.
Dr. Jane Maher
Late last year, NCI researchers and their collaborators published results from a recent survey of more than 1,100 U.S. oncologists and more than 1,000 U.S. primary-care physicians about their practice regarding survivor care plans for their cancer patients (J. Natl. Cancer Inst. 2013;105:1579-87). These plans were used by about 20% of the surveyed oncologists and 13% of primary care physicians. Higher numbers reported giving patients treatment summaries at the end of their acute care, usual practice for half of the responding oncologists and about a third of the primary-care physicians.
