A Tough Transition: Cancer Survivorship Plans Slow to Take Hold
With the treatment for her breast cancer now complete, Batley is beginning the transition to a new stage of cancer survivorship. Physicians other than her oncologist will now be expected to manage her long-term care, including prescribing follow-up cancer screenings and monitoring her for late effects of treatment.
But is she ready for that transition?
"When I think about it logically, do I really need to see my oncologist 10 to 15 years after I've completed treatment? Probably not," she said. "But I'm only 6 years out, and I feel like, 'I had cancer. I'm a cancer survivor. I need to talk with somebody who knows about cancer.'"
Batley's trepidation is just one of a multitude of challenges that many cancer survivors face. These common issues were the impetus for the Institute of Medicine's (IOM) influential 2005 report, From Cancer Patient to Cancer Survivor: Lost in Transition.
The report's central recommendation—made all the more important by the estimate that the number of U.S. cancer survivors will increase from the current 13.7 million to nearly 18 million by 2022—was that all patients completing treatment should receive a survivorship care plan (SCP), a blueprint to help survivors navigate the ebbs and flows of post-treatment life. (See the sidebar.)
It's too soon after the report's release to determine whether the use of SCPs improves care, several survivorship researchers agreed. The studies performed to date paint a mixed picture of the progress in refining SCPs so far.
If one thing is clear, noted Dr. Carly Parry of NCI's Office of Cancer Survivorship, it's that there is still a lot to learn about SCPs. "If survivorship care plans are going to become the standard of care," she said, "it's really important that we carefully evaluate their efficacy and viability in the real world."
The progress in refining and implementing SCPs can be measured several ways.
From the survivor's perspective, "We feel good about what we're hearing, although much of it is anecdotal," said Ellen Stovall of the National Coalition on Cancer Survivorship (NCCS) and a member of the IOM committee that wrote the 2005 report. Survivors appreciate the plans, Stovall continued. "[A plan] helps them know what's coming next, providing some predictability and order to their follow-up care."
But according to two studies, one that included only NCI-designated cancer centers and another that included centers that are members of the LIVESTRONG Foundation's Survivorship Centers of Excellence program, many survivors do not receive the plans. And when they do receive them, the plans often fail to include all of the IOM-recommended elements.
The IOM: Essential Components of Survivorship Care
- Prevention of recurrent and new cancers, and of other late effects
- Surveillance for cancer spread, recurrence, or second cancers
- Assessment of medical and psychosocial late effects
- Intervention for consequences of cancer and its treatment
- Coordination between specialists and primary care providers to ensure that all of the survivor's health needs are met
Elements to Include in a Survivorship Care Plan
- Cancer type, treatments received, and their potential consequences
- Specific information about the timing and content of recommended follow-up
- Recommendations regarding preventive practices and how to maintain health and well-being
- Information on legal protections regarding employment and access to health insurance
- The availability of psychosocial services in the community
The time required to compile the plans—particularly by an oncology workforce that is already stretched thin—is a significant barrier to their broader use, stressed Dr. Carrie Stricker, of the University of Pennsylvania Abramson Cancer Center, who led the study of the LIVESTRONG centers. "Also, we haven't come to a consensus on what the critical elements of [SCPs] should be."
At Wayne HealthCare in Greenville, OH, Dr. Daniel McKellar, a surgeon who directs the hospital's cancer program, and two other staff members are responsible for developing the care plans. They use the SCP template developed by Journey Forward, a public/private collaboration.
Several other organizations, including the American Society of Clinical Oncology (ASCO) and the LIVESTRONG Foundation, in conjunction with Abramson Cancer Center, have also developed survivorship plan templates (here and here). And NCI plans to release a program announcement on the topic soon.
Although the process for developing an SCP goes fairly smoothly at Wayne HealthCare and doesn't require too much time, that's not the case at many cancer centers, explained Dr. McKellar. He should know. As the incoming chair of the American College of Surgeons (ACS) Commission on Cancer (CoC) and a surveyor for the CoC, he regularly visits ACS-accredited cancer centers.
SCPs are a hot topic during those meetings. In standards released in 2011, the CoC announced that it would require all ACS-accredited facilities—where approximately 70 percent of newly diagnosed cancer patients in the United States are treated—to provide SCPs to all patients by 2015.
"We allowed for the 3-year phase-in period so we could better understand the barriers to, and develop best practices for, implementation," explained Dr. McKellar.
Bridging Multiple Divides
A critical—and, according to Stovall, understudied—component of a survivor's transition to post-treatment life is the handoff of routine care from the oncology clinic to the primary care office. Even if a cancer survivor's primary care physician receives the patient's SCP, for instance, there is no consensus on how the patient's subsequent care should be managed.
A study presented at the 2012 ASCO annual meeting, for example, found a substantial disconnect between oncologists' and primary care physicians' beliefs about survivorship care. Most oncologists surveyed in the study questioned primary care physicians' ability to provide the appropriate follow-up care and thought that oncologists were best equipped to provide such care. The majority of primary care physicians, on the other hand, felt most comfortable with a shared management approach in which they would care for patients alongside oncologists and their staffs.
And then there are the survivors like Kris Batley, who, regardless of whether they have an SCP, often aren't ready to depart the familiar folds of the oncology clinic.
"That is a key concern," said Dr. Eva Grunfeld of the University of Toronto, who has studied cancer survivorship for more than 20 years. Survivors "need reassurance that they are still part of the system and that if they need specialist care again, it will be available to them," she said.
The Next Research Wave
Dr. Grunfeld led the only randomized clinical trial to test an SCP's effects on survivors—in this case, women treated for early-stage breast cancer. In the trial, women who had an SCP did not have less cancer-related distress, the study's primary endpoint, than survivors who did not receive a plan.
Other clinical trials of SCPs are beginning to move forward. Dr. Stricker, for example, is leading a pilot trial to test the use of what she calls a "Cadillac" SCP that includes the information that wasn't captured in other plans. "This really is a comprehensive document that covers most, if not all, of the IOM-recommended content," she said.
A plan helps [survivors] know what's coming next, providing some predictability and order to their follow-up care.
And through its Grid-Enabled Measures initiative, NCI is supporting an effort to identify the most critical outcome measures to be used in SCP-related studies, such as quality of life, health care use, and costs.
Researchers in the field agree that progress is needed on many fronts. Payment reform, for instance, would ensure that cancer centers are reimbursed for preparing SCPs and reviewing the plans and the transition to survivorship with patients, Stovall noted. Advances in information technology, particularly the ability to link electronic medical records with SCPs, would make preparing SCPs much easier, Dr. Stricker said.
In addition, researchers need to test how best to develop, tailor, and implement SCPs and models of survivorship care to meet survivors' needs, explained Dr. Parry. The most appropriate transitional and follow-up care may differ depending on factors such as patients' age, their type and stage of cancer, the treatments they received, and the resulting degree and intensity of follow-up care needed, she continued.
Batley, who was treated at Abramson, received her SCP after meeting with a nurse practitioner in the center's Breast Cancer Survivorship Clinic to discuss post-treatment challenges. "It was great," Batley said. "We talked about things I never would have talked about with my oncologist, like anxiety and weight gain.
"I can understand why people are concerned about this issue," she continued. "There are so many more survivors now. And oncologists have only so many hours in a day."