Since President Richard Nixon declared a “War on Cancer” in 1971, the number of cancer survivors in the United States has quadrupled  and is still rising. Thanks to advances in cancer detection and treatment, the almost 15 million cancer survivors in the United States today could grow to some 19 million by 2024 . Increasing survival rates have resulted in a shift: cancer is often treated as a chronic illness rather than a death sentence. However, having so many cancer survivors to monitor, track, and treat has led to growing pains for healthcare providers—forcing them to develop new ways to treat this increasing yet still vulnerable population.
Follow-up Care: Vital for Cancer survivors
An end to a patient’s cancer treatment doesn’t mean an end to that patient’s need for vigilant medical care. “It’s not over when it’s over,” says Julia Rowland, Ph.D., director of the Office of Cancer Survivorship at the National Cancer Institute (Figure 1, right). Cancer survivors often have persistent symptoms such as fatigue, pain, memory difficulties, sexual dysfunction, and psychological issues that need to be addressed—sometimes for years after they’ve finished chemotherapy or radiation.
Cancer survivors also need ongoing medical care and monitoring for problems caused by cancer treatments. “As we have increased the research among long-term survivors, we realize that very few of our therapies are totally benign,” Rowland explains. For example, some chemotherapy drugs can damage the heart, and women who underwent chest radiation to treat a childhood cancer have a 20 times higher risk of later developing breast cancer .
Other patients may have a genetic predisposition or lifestyle factors that place them at a higher risk of developing a secondary cancer. And most patients need to be educated about symptoms that might suggest their original cancer’s potential recurrence. Follow-up care and monitoring can help identify these issues early, leading to better health for cancer survivors.
Lost in Transition
Unfortunately, survivors don’t always receive this vital follow-up care. In 2006, the Institute of Medicine (IOM) released a 536-page report with the rather damning title From Cancer Patient to Cancer Survivor: Lost in Transition . In it, the authoring committee sums up its findings: “Many cancer survivors do not receive comprehensive survivorship care. They are, in effect, lost to follow-up. Some survivors may receive aspects of posttreatment care from their cancer care or primary care providers, but such care is rarely comprehensive or coordinated. Many survivors are not aware of their increased risk for late effects and do not seek the care they need.”
The rise in the number of cancer survivors has been both a roaring medical success and a logistical nightmare. In the past, cancer survivors may have continued to receive their follow-up care from their oncology providers; as the number of survivors has ballooned, however, this model of care has become less and less practical or even feasible. “There simply are not the resources—whether in the community-based or academic-based cancer center—to care for all the cancer survivors,” says Kevin Oeffinger, M.D., director of the Cancer Survivorship Center at New York’s Memorial Sloan Kettering (Figure 2, right). “And, in fact, that’s probably not the best medicine. You really need to get people transitioned properly back into primary care and provide the key information for the primary care physician.”
So when should a patient transition to primary care? And what is the best way to coordinate care among the patient, oncologist, and primary care provider? One of the eight recommendations presented in the IOM report for improving health care and quality of life for cancer survivors seems poised to tackle this challenge: the survivorship care plan.
Survivorship Care Plans
The IOM’s report describes a survivorship care plan as “a comprehensive care summary and follow-up plan that is clearly and effectively explained.” These plans have two parts: a treatment summary that lays out information about a patient’s family history, cancer diagnosis, and treatment and a care plan detailing follow-up screenings, symptoms to be on the lookout for, and lifestyle recommendations. The idea is that each plan be tailored to the unique needs of an individual patient.
This may seem like an obvious idea, but a 2009 study published in the Journal of Clinical Oncology found that, while about two-thirds of oncologists said they always or almost always discussed survivorship care recommendations with patients, just 32% suggested where and with whom cancer survivors should seek follow-up care . And fewer than 5% of oncologists provided an actual survivorship care plan to their patients.
But now the IOM’s recommendation has some teeth. In 2012, the American College of Surgeons’ Commission on Cancer (CoC) announced it would phase in requirements that patients must receive survivorship care plans if cancer centers and hospitals were to maintain their CoC accreditation. The original goal was that all centers would have plans in place by 2015. Due to pushback from cancer centers, the CoC has loosened the schedule. Now, the goal is that cancer centers and hospitals provide survivorship care plans to at least 50% of eligible patients by 1 January 2017 and to all eligible patients by 1 January 2019 . Why is it so difficult to implement something that—on its face—seems relatively straightforward?
It turns out that creating these plans is not straightforward— at least not yet. Their preparation takes time and expertise. “The tumor registry data historically [have] been kept somewhere totally separate from your medical visit records,” explains Rowland. “And if you had complex care, you may have been seen by a surgeon, plus a medical oncologist, plus a radiation oncologist, and they’re not all necessarily in the same system. So populating this is a pain the neck—even for people who are very skilled at it.”
“It’s a whole shift in the workflow process,” explains Deborah Mayer, Ph.D., R.N., who directs Cancer Survivorship at the University of North Carolina at Chapel Hill (Figure 3, right). Mayer led an effort to try to create a survivorship care plan that would be generalizable across multiple settings using Epic, one of the largest electronic health record (EHR) systems in the United States. “What we tried to do is to streamline the electronic resources to make it as simple and least time consuming as possible. We’ve gotten it down to being able to complete it in a couple of minutes and then deliver it.”
This streamlining is key because insurers currently don’t provide reimbursement for the creation of care plans. “There is reimbursement if it’s a provider that can bill for the time they deliver it, but there’s no reimbursement for the time it takes to create it,” says Mayer. And, when there’s no reimbursement, then whose job is it to actually create the plans? “Everybody believes that it’s a good idea, but everybody’s saying, ‘I’m fully overburdened, and I can’t take on one more thing,’ so it’s hard pinning down who’s going to deliver it and when,” explains Mayer.
Even when a cancer center has people trained to create survivorship care plans, sharing this information across institutions is not always easy. “Many institutions, ours included, are using patient portals to put survivorship care plans online and have the ability to e-mail back and forth with patients,” says Oeffinger. “Those systems have not been robust enough to allow other providers in other institutions to join into that conversation.”
The need to maintain patient privacy can make it tricky to share information across institutions, as can problems with interoperability among different electronic record systems. “I think if we had a single [EHR] system for the country, that would break down tremendous barriers,” says Oeffinger. “That being said, Epic is probably the single largest vendor of [EHRs] right now. And even within that, many times, more times than not, one Epic system cannot still communicate well with another Epic system.”
Are Third-Party Tools the Solution?
To solve the problems associated with survivorship care plans, some people are developing websites and apps that break down barriers and make other information more accessible to patients across different EHR systems.
Journey Forward is a collaboration of organizations and companies— including Genentech, the National Coalition for Cancer Survivorship, the Oncology Nursing Society, and others—that have come together to create tools specifically for cancer survivors and their health providers. These include the Cancer Care Plan Builder, a free tool available to all oncology professionals that can import data from some EHR systems and cancer registries to create personalized survivorship care plans. Journey Forward also offers a My Care Plan smartphone app for patients, which allows survivors to initiate the creation of their own care plans (with the help of providers) by walking them through a guided assessment.
Similarly, in January 2013 two oncology nurses founded Carevive, a company with the goal of improving outcomes in post-treatment survivorship. “There is a vast amount of knowledge about what should be evaluated for in cancer survivors and what care they should get. Yet we know that that knowledge is not getting translated consistently in practice,” says Carrie Tompkins Stricker, Ph.D., R.N., who is the chief clinical officer at Carevive (Figure 4).
Similar to Journey Forward’s tools, Carevive’s cloud-based system can pull data from EHRs and cancer registries. Carevive’s Care Planning System then maps these data to a library of evidence- based algorithms so that the guidelines in the plan can be specifically tailored for an individual patient. Carevive’s internal clinical team and external clinical advisory team (made up of approximately 1,000 experts) contribute to this library. The idea is not just to use web-based technology to keep track of and share survivorship care plans but also to update the content of care plans in response to new scientific findings.
Carevive also collaborates with academic institutions to facilitate research on which treatments have the best outcomes for cancer survivors. “Our vision as a company is absolutely about not only amassing the existing data and keeping [that data] up to date but bringing in new data—what are patients reporting, what treatments are they getting, what are their outcomes,” Stricker explains.
Expanding the use of tools like those from Journey Forward and Carevive will require educating clinicians about their existence and convincing them of their usefulness. Says Oeffinger, “Carevive is one of the programs, and there are others, that are growing and learning how to connect. I think that they’re all pointing in the right direction, but I think their utility is still just being learned about.” Mayer shares a similar sentiment: “We can think about a lot of apps and a lot of ways we can use our [EHRs] to improve this so that patients don’t fall through the cracks. I don’t think it’s a one-solution answer, and I think it’s going to take a while to figure them out and implement them.”
One development that might help expand the number of patients receiving survivorship care plans is an improvement in the reimbursement scenario. “Mandates that are related to accreditation and desire to improve quality of care will only get one so far because institutions have to change structures and personnel to be able to support these processes and thus need money to do so,” says Stricker.
This year, the U.S. government may have created the incentive that the survivorship field needs when the Centers for Medicare and Medicaid Services released its Oncology Care Model. The goal of this value-based reimbursement program is to provide financial support to centers to develop new services—such as survivorship care plans—for patients who have been given chemotherapy, as well as additional incentives for providers who can show improved patient outcomes. “The market is moving toward that, and that has been a much bigger—for our company—business driver than the accreditation standards have been for the last three years,” Stricker notes. “Since 1 July, we’ve seen our business accelerate substantially because now there’s a reimbursement.”
THe Future of Follow-Up
For her part, Rowland is cautiously optimistic about the future of health care for cancer survivors: “Follow-up care is important because the vast majority of people who are diagnosed and treated for cancer are going to be here for years. It’s a wonderful place to be, and our dilemma is to what are we returning individuals and how do we best care for them?” She adds, “I’m excited about it. I think we need to get this right, and we haven’t gotten it yet.”
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