Improving care for cancer survivors

Abstract

In 2006, the Institute of Medicine (IOM) outlined a series of recommendations2 to improve the quality of care for survivors, who often experience physical, emotional, and financial consequences from the disease and its treatment. Among other things, the IOM called on health care providers to use evidence-based clinical practice guidelines, assessment tools, and screening instruments to help identify and manage late effects of cancer and its treatment; proposed that patients completing treatment be provided with a comprehensive care summary and follow-up plan; and urged providers, patient advocates, and other stakeholders to work to establish cancer survivorship as a distinct phase of cancer care. However, in 2017, when the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine convened experts to examine the progress made since the IOM's report, it found that, despite some successes, many survivors were still receiving inadequate follow-up care and were as “lost in transition” as the IOM first observed more than a decade ago.3 What is more, researchers have projected shortages in the healthcare workforce that could further exacerbate the problem. Leaders from the ACS and the American Society of Clinical Oncology (ASCO) have been exploring ways to address these challenges. They organized a 2018 summit and held a panel discussion at ASCO's 2019 annual meeting to discuss specific steps for improving survivorship care. Catherine Alfano, PhD, vice president of survivorship at the ACS, and Deborah Mayer, PhD, RN, director of cancer survivorship at the Lineberger Comprehensive Cancer Center of the University of North Carolina (UNC) at Chapel Hill, also co-authored a commentary on the topic in the Journal of the National Cancer Institute earlier this year.4 According to Dr. Alfano, one solution that some researchers have long proposed is to transition from a one-size-fits-all approach for survivorship care to a more personalized, stratified pathway approach. “Right now, the system is very haphazard,” she says. “Some oncologists are holding on to patients they don't really need to see, while some patients are slipping through the cracks or others are getting double tested.” Further, she says that when some patients begin to be monitored by their oncologists, they often stop seeing their primary care providers, and this means that no physician is assessing non–cancer-related health problems they may have. In essence, Dr. Alfano says, the intensity of survivor follow-up care should be determined by multiple individual factors, including risks for recurrence, long-term and late effects of cancer, and second cancers as well as personal and socioenvironmental factors (where patients live and their marital status, for example, can have an impact on their survival and healthcare needs). Some patients with very low risks and needs can simply be followed by their primary care providers. However, those at highest risk and experiencing more problems from their cancer require much greater levels of surveillance and likely will need to be followed by a multidisciplinary team that includes oncology and primary care providers as well as other specialists. Meanwhile, a third survivor group with average-level risks or needs would benefit most from a more moderate followup pathway that includes a mix of care from both oncologists and primary care providers. According to Dr. Alfano, this would help curb the high health care costs that leave many survivors struggling financially and address the inefficiencies found throughout the system, particularly “when there simply are not enough oncologists and oncology nurses in the country to see new and current patients and monitor survivors,” she says. Viraj Master, MD, PhD, a professor and director of integrative oncology and survivorship at Emory University's Winship Cancer Institute in Atlanta, Georgia, agrees. “If we don't have personalized follow-up, we keep all patients on the same treadmill with multiple scans and visits,” he says. Not only can that cause additional toxicity for some patients who do not need that many scans, he says, “it places a burden on the system, diverting attention away from those who need it most.” The personalized, risk-stratified approach to survivorship care that Dr. Alfano and her colleagues are proposing has already been implemented in the United Kingdom and Australia. After piloting the effort, England has now implemented it for all cancer survivors throughout the country, whereas Northern Ireland is currently using the approach in survivorship care for breast cancer survivors. Evaluations from these efforts indicate that not only are survivors' needs being better met, but clinics' flow and efficiencies have improved while costs are declining, Dr. Alfano says. Of course, the United Kingdom has a single-payer health care system, so the model is much easier to carry out there, she notes. Developing such an approach in the United States with its multiple payers and labyrinthine structure will be much more complex, she says. “That's why we've been working on a multipronged effort and getting the experts together. Some health care system has to be the first to step in and pilot the approach.” For the first action item, the ACS is funding a group of investigators from UNC at Chapel Hill, led by Stephanie Wheeler, PhD, MPH, the associate director of community outreach and engagement at the UNC Lineberger Comprehensive Cancer Center, to develop a model. The ACS/ASCO group then plans to reconvene in early 2020 to review the investigators' work and determine next steps. “I'm highly optimistic that the medical community will continue to make strides in matching the intensity of surveillance to who needs it. As to how those strides will be implemented in terms of costs and in terms of patients understanding them—I think that will be a challenge for us.” —Viraj Master, MD, PhD According to Dr. Alfano, helping patients to learn how to self-manage their health is also key. Although the practice is well established in diabetics and asthmatics, who are taught to monitor and treat their own symptoms, the same techniques have not been applied to oncology. “The system takes cancer patients' power away,” she says. “The patient becomes this person who things are done to—who doesn't have any sense of agency over his or her own health anymore.” The goal of self-management is to change that scenario by returning the reins of control to patients with cancer in areas such as diet, exercise, sleep, and medication. Accomplishing that will require the support of oncologists, nurses, and physical therapists who can help to educate patients. Still, Dr. Master notes that patients with poor health literacy will require more attention and many more resources. “Doing a fancy, glossy brochure about a survivorship plan is useless if it's not contextualized as to what the patient can absorb,” Dr. Master says, adding that the median American health literacy level is that of a seventh-grader. He and his colleagues have investigated ways to improve education among patients with cancer. Working with Rebecca Pentz, PhD, a professor of hematology and oncology in research ethics at Emory University School of Medicine, Dr. Master recently published an article in Cancer6 about their success with using 1-minute videos to explain chemotherapy terms commonly used by physicians. The ACS is piloting a few user-friendly efforts to help patients learn self-management techniques. For example, it has partnered with the National Cancer Institute to offer Springboard Beyond Cancer (https://survivorship.cancer.gov/), a free web tool that offers simple actions that survivors can take to manage their health and well-being, along with other resources. Moreover, the organization is pilot testing a telephonic, self-management coaching program in its south region that could be expanded to other areas if proven successful.