Cancer Survivorship: Next Wave of Individualized Medicine?

Interviewer: Lidia Schapira, MD; Interviewee: Kevin C. Oeffinger, MD


November 24, 2015

Editor's Note : The 14 million cancer survivors in the United States are frequently pointed to as proof of the advances in modern cancer treatments. Yet, they pose significant challenges to oncologists and primary care physicians who ponder how to develop a blueprint of care to ensure that those who survive cancer live long and healthy lives.

The inaugural Cancer Survivorship Symposium, to be held January 15-16, 2016, in San Francisco, California, may represent a watershed event for the field of cancer survivorship. Sponsored jointly by the American Academy of Family Physicians (AAFP), the American College of Physicians (ACP), and the American Society of Clinical Oncology (ASCO), the symposium will bring together primary care physicians and oncologists to address the pressing issues of survivorship.

Kevin C. Oeffinger, MD, cochair of the symposium and director of the Cancer Survivorship Center at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City, recently spoke to Lidia Schapira, MD, associate professor at Harvard Medical School and editor-in-chief of ASCO's, about the highlights of the upcoming Cancer Survivorship Symposium and the emerging models of survivorship care.

Multiple Paths From Cancer to Primary Care

Dr Schapira: What got you interested in cancer survivorship?

Dr Oeffinger: I've been involved in this area for about 20 years, and the reason is a pediatric oncologist by the name of George Buchanan, who was for many years a leader in pediatric hematology oncology and former chief of pediatrics at University of Texas Southwestern (UTSW) in Dallas.

In 1993, when I joined the UTSW faculty in the Department of Family Medicine, George Buchanan pitched the idea of starting a program for adult survivors of pediatric cancer. And that's what we did. In 1994, we opened one of the first programs for adult survivors of pediatric cancer in the country. The program grew rapidly because of the health needs of that high-risk population. Then in 2005, I was recruited to MSKCC to help advance their survivorship efforts, both in terms of clinical care and research.

Dr Schapira: One thing I've been thinking about is how the care of adult survivors should differ from the care of adult survivors of pediatric cancer. Should we be using the same model?

Often where we fail in cancer survivorship is in trying to fit the same model to all risk strata.

Dr Oeffinger: No, there are actually many models. Pediatric cancer survivors are simply one of our high-risk groups among cancer survivors. Often where we fail in cancer survivorship is in trying to fit the same model to all risk strata.

Typically, we stratify the population of cancer survivors into three groups. The majority of our cancer survivors have undergone surgery or treatment modalities that will not significantly affect their overall long-term health. For that group, the primary issue in survivorship is to make sure, as they come to the end of their treatment, that they have no significant organ damage or significant psychosocial trauma. Taking into account their specific risk for recurrence, these patients can be transitioned back to their primary care clinician relatively soon.

The middle group are those patients who have been treated with cancer therapies that have a low to intermediate risk for a long-term or late effects. Many clinicians grapple with how best to help these patients transition from acute cancer care back to primary care, particularly when we have to allocate finite resources. What's used in many academic centers as well as in our community oncology centers is a nurse practitioner or physician assistant to coordinate the transition of these patients from acute care by the oncology team to a surveillance plan and later a survivorship care plan. Within perhaps a couple of years, depending on their comorbidities, which in some cases outweigh the risk of their cancer therapy, these patients can be transitioned back to primary care.

The high-risk group represents the smallest number of cancer survivors. These high-risk survivors include some pediatric cancer survivors (a number of pediatric cancer survivors fall into the lower-risk groups), young adult survivors of Hodgkin lymphoma treated with multimodality therapy, and patients who received allogeneic (or even autologous) stem cell transplants.

So we think in terms of a stratified approach. Does that make sense?

Saying Goodbye to One-Size Survivorship

Dr Schapira: It sure does. If I'm understanding you correctly, we collectively need to figure out how to personalize these treatment plans on the basis of such factors as comorbid conditions, the risk for cancer-related complications, and psychosocial and physical experience to ensure a safe transition or hand off to the primary care clinical pool. How do we go about doing that?

Dr Oeffinger: We need to realize that we are changing traditions. We are changing physician habits. We are changing cultures. And change sometimes occurs slowly.

For example, for many years at UTSW, we used a risk-strata approach for pediatric cancer survivors: We transitioned low-risk patients back into the community with a single-page cancer survivorship care plan, and we followed patients at higher risk long-term. That model works in terms of transitioning patients back into the community and getting them the services they need.

There has been an oncology culture of following cancer patients for life. Yet, many cancer survivors simply got lost over time.

But that approach is slow to be adopted at large centers such as Massachusetts General Hospital or MSKCC where there has been an oncology culture of following cancer patients for life. Yet, many cancer survivors simply got lost over time. Much of our follow-up care at Sloan Kettering consisted of initial visits that focused on surveillance. But when somebody is 6 years, 8 years, 10 years out, surveillance becomes less of an issue.

We recognized that key elements recommended for survivorship care were not being accomplished. So in 2006, under the leadership of Mary McCabe, MSKCC launched our first pilot program for nurse practitioner clinics to take care of low- and intermediate-risk survivor populations in breast cancer, colorectal cancer, and in some cases thoracic cancer.

Our group found that we could standardize the care plan that our nurse practitioners or physician assistants followed on the basis of what the oncology team thought was the best available evidence. This standard of care was applied across a population with little variation in practice and, most importantly, with very high satisfaction from patients.

Oncologists said: Okay, that's fine, we appreciate our nurse practitioners and physician assistants seeing these patients, but we want the patients to stay in the system. But you can only do that for so long.

Several years ago, we started transitioning people back into the community. What oncologists want is to educate a group of primary care physicians and refer all cancer survivors to that group, but you can't do that in New York City because what you have is a thousand primary care physicians. So we have been tracking how we're doing, and we are making progress. We are changing culture.

Dr Schapira: Are there special factors that encourage this cultural change?

Dr Oeffinger: Two factors probably contribute to achieving wide implementation of this approach. First, you need champions at the administrative and clinical levels. So if the groups of oncologists—medical, surgical, radiation oncologists—or other healthcare providers really buy in to the approach, the program has a good chance of flourishing. If you look at most mature programs, there's been real buy in even by senior clinicians and administrators. At MSKCC, Mary McCabe, RN, who is the senior nurse researcher and director of the Cancer Survivorship Center Clinical Program, has been the real leader in developing and implementing this program. This past year, we had over 12,000 patient visits within that type of setting, so virtually all of the major cancer groups now are represented in some form of a survivorship clinic.

Second, you need to prepare the patients for what to expect, and I think our nurse practitioners and physician assistants are extremely good at getting people ready for transitioning back to primary care. The number-one issue patients want to know is: "If I have a problem, can I get back in touch quickly?" We have a special 1-800 number set up for our cancer survivors and for their providers, and this is part of the survivorship care plan. We track all of those calls. It's a model that I think is working. It's economic, it's efficient, and it's high-quality care. Importantly, this approach gets good buy in from oncologists, patients, and from primary care physicians.

Some Resistance From Oncologists and Primary Care Physicians

Dr Schapira: Have you encountered resistance or reluctance from the oncologists in letting go of their patients? And have you encountered any resistance from the primary care community in receiving these patients? Do they feel overwhelmed or inadequately prepared to follow these patients?

Dr Oeffinger: We definitely have struggles in both directions, and that's to be expected. Again, we're changing the paradigm of care of cancer survivors that has been established over the last 4, 5 decades. Our clinicians, either at cancer centers or in the community, all trained up with that old paradigm of cancer survivors, and sometimes their patients' comorbidities are managed, and sometimes they are not.

It's different transitioning somebody who's 1 year off of therapy vs somebody who's 20 years off of therapy. If I have a patient who has followed with one of our senior oncologists for many, many years, the likelihood of that patient being successfully transitioned is lower. There's a trust bond there; there's a long-standing relationship, and that's not as easy a patient population to introduce to this newer paradigm of survivorship care.

Even in high-risk populations, we want patients to have a primary care physician.

Even in high-risk populations, we want patients to have a primary care physician. They often have healthcare needs above and beyond what a cancer center can provide. So I spend a reasonable amount of time communicating with primary care physicians. The key message is that primary care physicians want the care information prioritized. Don't bury the key information on page 5 of a dense document, and allow for the timely communication if an issue arises.

Primary care physicians, when they get the information they need, are feeling a bit more comfortable with this approach. We don't want to be perceived as simply dumping our problems or our issues on unprepared clinicians. We all recognize that we have done a disservice to cancer survivors by letting them stay in the system of oncology services and not allowing their significant comorbidities to be adequately addressed. Hopefully, as the clinical culture evolves and transition to primary care becomes more standard, we'll remedy that problem.

I think the key aspects of this approach are to understand who to transition, when to transition, who the provider is, and what care is being delivered. These are things that we have been in the process of evaluating, as well as costs.

Dr Schapira: Even when the transition is successful, I imagine that patients still fall through the system. Are there techniques that provide a safety net?

Dr Oeffinger: Many of our patients, especially those living in large metropolitan areas, may change their primary care physician three times within a 5-year time period, which means that communication between primary care physician and oncologist can break down.

At MSKCC, as in other centers, we are trying to make the cancer survivorship plan reside on our patient portal. We see the patient portal as a place where problem lists and medication lists can reside. So even when patients get transitioned out, they have access to that portal. No matter where they are living or who their physician is, they can go online and get that information.

The "Buzz" About the Symposium

Dr Schapira: The Cancer Survivorship Symposium being held in January will address some of these issues. How did the Symposium come about, and what are you hoping it accomplishes?

Dr Oeffinger: The reality of this symposium reflects the growth of interest in and need for information in this area. We approached ASCO, ACP, and AAFP—the three professional societies whose membership spans the oncology community and primary care community—and all three societies said that what they're hearing from their members is that survivorship is a very, very important issue. They were willing to cosponsor this symposium for 5 years.

I'm cochairing the January meeting with Ann Partridge, MD, from Dana-Farber Cancer Institute. We have a wonderful diversity of speakers who come from both the oncology and primary care worlds, spanning academic and community settings, and ranging from physicians and nurses to behavioral scientists.

The number of abstracts far exceeded our expectations—I believe we have received two times the number that ASCO was anticipating—and preregistration already suggests that we will exceed the estimated attendance.

The program has created a stir in the United States as well as other countries whose healthcare systems are struggling with survivorship issues.

Probably one of the most forward thinking of all projects that's being conducted around the world is a research program in Canada led by Eva Grunfeld, MD, from the University of Toronto. Eva has a large grant to examine the cancer continuum between oncology and primary care across all of the provinces of Canada. The study will use work teams for each of the steps of cancer care: the screening, the precancer diagnosis, the handoff to the oncologist at the time of the diagnosis, the spectrum of care during therapy, and the handoff to primary care up to the patient's end of life. It's a very forward thinking way to take these partnered teams and look at each aspect along the cancer care continuum to see how we could improve upon the quality and standardization of care. I think that this study is a great example of how the science of survivorship has evolved.

We're not solving the world's problems in one symposium. But it's a step towards improving dialogue and care.

Ann Partridge and I keep telling everybody to remember that this is just one meeting. We're not solving the world's problems in one symposium. But it's a step towards improving dialogue and care, and we're very excited.

Individualized Survivorship: Extension of Personalized Medicine

Dr Schapira: What is the focus of your own research? And what is the scope of research being done at your institution and other large centers?

Dr Oeffinger: My two main areas of research have focused on second cancers and cardiotoxicity. What can we do about lowering the risk for second cancers and cardiovascular disease following successful cure of the primary cancer, both in terms of prevention and screening?

The research agenda that we have developed for our Cancer Survivorship Center at MSKCC breaks into about five global areas:

  1. Life-threatening illnesses, which include cardiotoxicity and second cancers—it is in this area that my personal research is focused;

  2. Life-altering side effects, including neurocognitive problems and sexual dysfunction such as infertility—these are key concerns to cancer survivors;

  3. Risk-prediction modeling, which focuses on, for example, determining the risk for thyroid cancer or breast cancer for patients who have been treated with radiation;

  4. Behavioral intervention, which focuses on such things as smoking cessation or exercise intervention; and

  5. End-of life concerns in which colleagues in psychiatry and behavioral science study the needs of the cancer survivor and those of the spouse or partner as the survivor approaches the end of life.

But these areas of research are not confined to my institution. I have seen a similar unfolding of programs and research in Boston, Philadelphia, Chicago, San Francisco, Los Angeles, Seattle, and perhaps Denver and Atlanta. The real goal is to take this approach well beyond our large cancer centers by continuing to educate clinicians in all types of practice settings.

Dr Schapira: Looking ahead, what do you think survivorship is going to look like 10 years from now?

Dr Oeffinger: I tell our patients that this is probably one of the most exciting times of medicine. Targeted therapy was a dream 10 years ago, and it is already a reality for some patients. I think cancer survivorship is an extension of that.

We will move closer and closer to a more individualized approach to survivorship care, in which we will better understand the interaction between one's genetics and genomic blueprint, lifestyle behaviors and treatment exposures that increase recurrence risk, and comorbid health problems.

The level of sophistication that we see now suggests that in another 10 years, we will have the ability to have an individualized approach to survivorship care that centers on an informed decision of a cancer patient. Looking at the progress made over the past 10 years gives me good reason to be excited.


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