;)
long-term cancer survivors: long-term cancer survivors
Long-term cancer survivors are a testimony to the efficacy of cancer treatments. But as the number of long-term cancer survivors increases, so does the need for high-quality care that addresses their special needs. Invited professionals in a number of disciplines including oncology, patient advocates, and long-term survivors spoke on this to subject at a workshop hosted by the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine in Washington, D.C. A summary report of the workshop will be published by the National Academies Press.
In 2006, the Institute of Medicine (IOM) published an influential report, From Cancer Patient to Cancer Survivor: Lost in Transition. That report noted that cancer survivors are at risk for long-term side effects and late effects of cancer and cancer treatment, along with the psychosocial (anxiety, depression, fear of recurrence) and financial side effects that can accompany cancer diagnosis and care. It also highlighted the need to identify best practices in high-quality survivorship care.
Ideal, Quality Care
High-quality care “is not a dream; this is what we all need,” said Neeraj Arora, PhD, MS, a 23-year survivor of non-Hodgkin lymphoma who is an Associate Program Director in the Healthcare Delivery and Disparities Research Program at the Patient-Centered Outcomes Research Institute. “How many more years can we wait as cancer patients? I am becoming increasingly frustrated,” he said. In his talk, Arora, a former Research Program Director at NCI and a member of the Workshop Planning Committee, paid tribute to the late Ellen Stovall for focusing attention on the needs of long-term cancer survivors, as did other speakers at the workshop.
Stovall, a member of the Editorial Board of Oncology Times, died of cardiac complications related to her cancer treatments Jan. 5, 2016. A 45-year survivor of three bouts of cancer, she chaired the committee that produced From Cancer Patient to Cancer Survivor: Lost in Transition for the IOM. She became President and CEO of the National Coalition for Cancer Survivorship in 1992 and was its senior health advisor at the time of her death.
In telling his personal story, Arora noted that coordinated, patient-centered, team-based care is the ideal for cancer survivors, but it is often not what they receive when they make the transition from active treatment to survivorship care. Despite his professional background in the cancer field, “I suddenly felt that I didn't know who was in charge of my care,” said Arora. He stressed that today professionals who care for cancer patients “are in a position to make the care our loved ones receive better.” Addressing the audience, he said, “On the road to delivering high-quality care, always walk in the shoes of the patient.”
There has been a change over time in cancer rehabilitation medicine, noted Patricia A. Ganz, MD, Co-Chair of the Survivorship Workshop Planning Committee; Distinguished Professor of Health Policy and Management in the Fielding School of Public Health at UCLA; Professor of Medicine in the David Geffen School of Medicine at UCLA; and Director of the Center for Cancer Prevention & Control Research at the Jonsson Comprehensive Cancer Center. Ganz noted that cancer care used to be hospital-centric, with cancer rehabilitation departments located within hospitals. Now, she noted, much cancer care is delivered in the community, and the system is more fragmented and less coordinated, with patients trooping from location to location. This can leave survivors wondering—as Arora did—who is in charge of their care when they leave active treatment.
Need for More Progress
While care of long-term survivors has improved, analysis of the recommendations contained in From Cancer Patient to Cancer Survivor: Lost in Transition shows there remains room for improvement, said Larissa Nekhlyudov, MD, MPH, Associate Professor in the Department of Medicine at Harvard Medical School; Clinical Director, Internal Medicine, for Cancer Survivors at the Dana-Farber Cancer Institute; and a member of the Workshop Planning Committee. She noted there is now more awareness of the needs of long-term cancer survivors, as evidenced by books, articles, and public activities, but much more recognition is needed.
As for survivorship care plans, a strong recommendation of the 2006 report, Nekhlyudov stated, “Provision of survivorship care plans is still quite limited.” Creating such plans “takes a lot of work and effort.” Commission on Cancer accreditation mandates such plans, and there are guidelines and toolkits available to help in their preparation. As for sources of guidelines on care of long-term survivors, Nekhlyudov said the Children's Oncology Group has led the way, while other groups such as the American Cancer Society (ACS), ASCO, and the National Comprehensive Cancer Network have also developed guidelines.
There have been some demonstration models to test high-quality, coordinated care for long-term care survivors, said Nekhlyudov, citing the Oncology Care Model of the Centers for Medicare & Medicaid Services as an example. As for metrics measuring quality of care for cancer survivors, “I think this recommendation is still a work in progress,” she said, adding that state cancer control programs need to make more progress in this area. As for professional education on cancer survivorship, she explained, awareness of the needs of cancer survivors needs to grow in the primary care provider (PCP) community; both the ACS and ASCO have contributed to education in this area.
Nekhlyudov believes much more progress needs to be made in reducing employment discrimination against cancer survivors, as does progress in their access to affordable health insurance. The Affordable Care Act has helped, she said, but more efforts are needed in this area. Finally, she stated all agencies need to support new research initiatives on survivorship care, especially long-term survivorship, to fill in knowledge gaps. These include survivorship of common cancers beyond breast cancer, needs of older cancer survivors, and needs of younger cancer survivors, with a view to helping survivors return to life, work, and/or school.
The specific issue of which professionals should follow long-term cancer survivors was much discussed at the workshop. This is a special concern given provider shortages of oncologists, PCPs, and nurses, said Catherine M. Alfano, PhD, MS, Vice President of Survivorship at the ACS. She recommended changing the cancer care mindset to orient providers toward long-term care from the time of diagnosis. In this new model, patients would be screened and managed for toxicities and these would be prevented where possible. Risk-stratified follow-up care would be implemented, with patients put into categories of high risk, low risk, and average risk. A cancer survivor would know from the beginning that he or she would be followed by a PCP after active treatment is completed, for example, and would know who that person is.
Professionals need to respect the diversity of survivorship trajectories, said Alfano, honoring those who want to fight their disease and those who hate that word and prefer a less-aggressive path. “We can't afford to leave anyone out,” she said.
What is needed is better communication between PCPs and cancer specialists, said Deborah K. Mayer, PhD, RN, AOCN, an advanced practice oncology nurse who consults with organizations to help improve cancer care. “PCPs are willing to play a role in the cancer care continuum,” she noted, but cancer specialists are oriented toward the specialty model. “We need to rethink how we deliver care,” said Mayer, a former President of the Oncology Nursing Society and Chair of ASCO's Survivorship Committee. She suggested better use of the electronic health record, apps, and electronic tools to help follow and monitor cancer survivors.
Given that many long-term cancer survivors are at higher risk of cardiac complications, there is a need for coronary artery disease risk prevention models for these survivors, said Kevin C. Oeffinger, MD, a family physician who is the founding Director of the Duke Center for Onco-Primary Care, Director of the Supportive Care and Survivorship Center at Duke Cancer Institute, and Professor of Medicine in the Department of Medicine at Duke University Medical Center. For example, he said, it is known that high blood pressure is the single most important risk factor in the development of heart failure in women treated with anthracyclines and trastuzumab. Interventions for improved physical well-being, including blood pressure control, are needed in long-term survivors, stressed Oeffinger.
Unfortunately, he said, there is a paucity of data on how to screen for second primary cancers in long-term cancer survivors, who are at higher risk for these second cancers. “We should be further along than we are,” he noted, adding that “evidence supporting long-term surveillance and intervention is needed.” He cited precision screening, chemoprevention, and the role of liquid biopsies as paths forward in monitoring and managing long-term cancer survivors.
Not all professionals feel comfortable in their ability to follow cancer survivors over a lifetime because they lack special education and training in this area, said Oeffinger. Asked by Oncology Times what is needed for PCPs to increase their comfort level in this role, he explained that PCPs can be pulled in during a patient's active oncology treatment so they are informed on the patient's treatment course from the beginning. Or a PCP with a particular interest in the follow-up of long-term cancer survivors within his or her medical practice can seek specific education on this topic and serve as a source of knowledge translation and transfer for colleagues.
Asked if PCPs, in general, are informed enough to follow cancer survivors for decades, Otis W. Brawley, MD, Chief Medical Officer at the ACS and a member of the National Cancer Policy Forum, stated, “There may very well be some PCPs who are equipped to follow cancer survivors. But there are very few in this space who understand the issues. Maybe we need a subspecialty of PCPs who understand the issues; not all do.”
Participants at the workshop agreed that improving the outlook for long-term cancer survivors will require a multidisciplinary team approach that considers needs of the cancer patient as a whole person.
“If we can improve psychosocial outcomes, we can improve health outcomes,” and research is needed to demonstrate this, said Julia H. Rowland, PhD, Director of NCI's Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, and a member of the Workshop Planning Committee. “Each one of us has to make a commitment to move the marker” to meet the needs of long-term cancer survivors, she emphasized. “If we don't move it, it won't move.”
Peggy Eastman is a contributing writer.
