Pathways for Cancer Survivors

Shelley Fuld NassoThanks to advances in medical research and more sophisticated methods of administration, cancer patients today are living longer than ever.1 Yet, while these advances have been universally celebrated by all health care stakeholders, they have also given rise to a new set of challenges for providers: survivorship.

As of January 2016, the National Cancer Institute estimates that there are 15.5 million cancer survivors in the United States, representing ~4.8% of the population.2 By 2040, experts project that this number will grow by almost half to 26.1 million.3 Multiple studies have demonstrated that these individuals face a number of unique challenges even after they have completed their treatment. Two studies of survivors of gynecologic cancers showed that women often experience significant psychosocial issues years after their cancer has subsided,4,5 and a 2006 study looking at a variety of cancer survivors showed that treatment can have a negative effect on individuals’ body image, sexual health and function, and socioeconomic status.6

In recognition of these problems, many providers and health care organizations have worked to enhance the quality of care they deliver after cancer has been cured. The American Society of Clinical Oncology (ASCO) has released multiple guidelines on survivorship for different cancer types and holds an annual symposium on survivorship, the next of which will be held January 27-28 in San Diego, CA. At Texas Tech University, researchers have developed a multidisciplinary program for breast cancer survivors that includes screening for depression and generalized anxiety while also providing dietary counseling.7 That program helped to significantly reduce incidence of anxiety and depression while also improving survivors’ overall quality of life.7

However, while programs like these have made great strides towards improving care for survivors, many still complete treatment with questions about what they are supposed to do next. There is also no financial incentive for systems and institutions to provide better care or resources for survivors, because reimbursement is tied only to treatment. For these reasons, many have called for the scope of clinical pathways to be expanded to include pathways for survivorship care.

One group that has led the charge for better quality care for survivors and for changes to the way the US health care system currently reimburses providers is the National Coalition for Cancer Survivorship (NCCS). The Journal of Clinical Pathways spoke with Shelley Fuld Nasso, chief executive officer of the NCCS, about the challenges survivors continue to face and how clinical pathways can address the shortcomings of survivorship care.   

How was NCCS started, and what is the mission of the organization? 

Well, we are celebrating our 30th anniversary this year, but we were started before there really was such a thing as survivorship. A group of survivors got together and decided that they wanted to change the language from “cancer victim” to “cancer survivor” and look at what that means. And really that refers to the entire process, from diagnosis through end-of-life. So, what we’re advocating for is not just close survivorship care, but quality of care throughout diagnosis, survivorship, and end-of-life. 

Our mission is to advocate for quality cancer care for everyone touched by cancer. We look at the system to see how we can try and deliver better cancer care. How we do this is primarily through public policy, but we also empower cancer survivors through a number of tools we provide that help them to be more informed about their care. Another way we do this is through our Cancer Policy and Advocacy Team. We actually just had a number of advocates in from around the country for our symposium for 2 days of training on some of these key issues in cancer policy that we work on and how they can be engaged with us. Those attendees then went to Capitol Hill to speak with their representatives about a number of policy issues.

Prior to your organization, was survivorship something that was being discussed?

It really wasn’t. Our founders began talking about this because, at the time, these people were being left on their own. We’ve made a lot of progress in survivorship care since then. The Institute of Medicine and other organizations have done a number of studies on the gaps in survivorship care, for example; but, while we recognize those strides, we are still hearing from patients all the time that when their treatment ends, they are left on their own to try and put the pieces of their life back together. And we hear a lot too that the first year after treatment is sometimes harder than the treatment itself, because they’re adjusting to their new normal and they don’t have the support that they need. So, while there has been a lot of attention and a lot of progress, there is still a lot more we can do to have a better transition after treatment for people who have completed their care regimens.

And, along with those people, you also have people who are never going to stop receiving treatment. Now, they have some support in that they are continuing to see their medical professional or oncologist, but they don’t always feel like they have the kind of care plan that guides them through treatment. That’s why we’ve advocated for the Planning Actively for Cancer Treatment (PACT) Act8 and more thorough cancer care processes at diagnosis so that people know what to expect during their treatment and after their treatment.

Can you tell us more about the PACT Act, what the proposed legislation does, and why NCCS is supporting it?

The PACT Act would create a Medicare code for services involving cancer care planning at diagnosis and any transition in care—whether it be because of disease progression or the failure of any treatment regimens—and then also at the transition to survivorship. Right now, physicians are reimbursed with evaluation management codes and not on the time they spend with patients. What we hear all the time from patients is that they want more time with their doctor, but doctors’ schedules and demands sometimes prevent them from being able to spend that time with patients. So when patients are having that discussion, a lot of time it isn’t a process of shared decision-making. And also, like we’ve mentioned, there’s no written plan provided to the patient. Those are things we would like to see. 

In the Centers for Medicare & Medicaid Services’s Oncology Care Model (OCM), which just launched this year, participating provider organizations are required to do these things. We think that’s a really positive step. We think that it helps patients by giving them more information and control over the planning process. That’s something we’ve been advocating for a long time—before the OCM—and we’re still pushing for it now. Because, while the OCM is a great step—with more practices involved than we thought there might be—it’s still not covering all patients who need this kind of care planning.

The OCM is expected to play a large role in the shift from volume-based reimbursement to value-based reimbursement. Do you think this shift has been positive for patients and survivors?

One of the keys will be to make sure that the quality measures used to assess high-value care are the right quality measures for patients. I have participated in a number of committees with the National Quality Forum (NQF) and have recommended a number of quality measures for cancer. But cancer measures really lag compared with other disease areas. Current measures are very process-oriented and do not account for the patient’s outcomes. Basically, they ask: did you offer this test? Did you do this procedure? But not about what happened to the patient and whether the patient had a good outcome—both clinically and functionally. So, we need better quality measures to ensure that we’re moving in the right direction. 

That being said, I think that the current system overall is not working in patients’ favor. It’s all about the expectation that volume and drug margins will fund all the other important things patients need. From a patient’s perspective, we would like to see physicians reimbursed for what they do rather than for the drugs they prescribe.

What are some of the things systems or providers can do to help survivors once they’ve completed their care regimens? 

We believe a survivorship care plan would be helpful, but people have attached so much importance to the plan itself when it is really about engaging with the patient in a discussion about how to properly monitor their health and about the importance of screening for future cancers. 

For example, one of our advocates had no idea that the chemotherapy she received could cause hearing loss. So, when she started having hearing problems, there wasn’t a reason for her to connect that back to cancer. No one told her that that was a potential side effect. There wasn’t a survivorship care plan that told her this was something she could encounter. So, she spent a lot of time and money on tests and visits with different doctors. Finally, when she went to see her oncologist, he told her, “Oh yeah, that’s a known side effect of your chemotherapy.” 

Now, if she had known that, or if there was some kind of connection back to her primary care provider to say, “Here is the chemotherapy she had, here are the potential side effects,” then she could have saved a lot of time, money, and stress. That wouldn’t address the fact that she has hearing loss, but at least she wouldn’t have gone through all this useless testing when it was a known side effect. We need something that tells survivors and their primary care physicians, “Here are the things we need to be jointly monitoring”—but that isn’t happening often enough. 

There are steps in the right direction in terms of having primary care physicians understand what their role is in assisting cancer survivors post-treatment. ASCO had a really great survivorship symposium in January, hosted in conjunction with a number of primary care professional societies. I believe it was about two-thirds oncologists and one-third primary care physicians in attendance, but it was an important step in the direction of better coordination between these two groups. 

It sounds as though you’d like to see a more personalized approach to the development of care when patients are diagnosed.

That is absolutely what we’re talking about. Having something in writing, too, that tells you exactly what you might encounter, as you receive treatment and after treatment is complete, would also help. You can go Google symptoms, but having something that is there and designed for you talking about the circumstances of your life and how certain treatments might react to other treatments you’re taking would do so much more than just having people Google their side effects to figure out if what they’re experiencing is related. A lot of these side effects you wouldn’t know are connected, especially when they happen years after you’ve completed your treatment. 

How do you think clinical pathways for survivorship can allow for this personalized approach?

Well, I would ask what is the difference between a guideline and a pathway? Are pathways drug regimens or a tool for guidance on how to deliver care in all facets of treatment? Because, we already have a number of guidelines on survivorship care that ASCO has developed with other organizations. What we’ve seen is that pathways have been used for mostly drug regimens, though some people have said that they should be expanded to include all of treatment and the options therein. That brings you to the question: what’s the difference? I think it’s a distinction that still needs to be clarified.

Regardless, I do think the guidelines that have been developed by ASCO and others definitely benefit from the patient perspective and do have parts that address proper survivorship care. Whether those need to be integrated into pathways depends on what pathways become and if they come to include more than just drug regiments.

Do clinical pathways do enough to account for the patient perspective in care?

A lot of it depends on how the pathways are developed and used. My understanding from the physicians I’ve spoken to is that they use pathways to standardize the care they deliver to make sure there aren’t any errors in dosing and ensure that quality care is delivered efficiently and consistently, which can make side effects more manageable. That sounds like a reasonable approach, but any time you have 100% adherence to a pathway or guideline, you probably aren’t paying full attention to what the patient’s needs are, right? 

So, I think how these are implemented and the question of whether they are absolute or a guideline for how to make care safer and more predictable is the question that still needs to be answered. And then, as long as the decision-making process includes the patient’s preferences and goals for their care, I think that makes sense. 

That’s a concern we have with a number of the value frameworks as well—that they only consider one measure of efficacy and one for toxicity and don’t account for the fact that different people have different ways of valuing their treatment, such as quality vs quantity of life or the presence of specific side effects. If a physician says something is well tolerated, you still have to ask the patient if it is well tolerated. And a lot of the products or drugs physicians say are well tolerated aren’t for patients. So, you have to really explain that to the patients and help them to understand what they are deciding on and if they’re willing to accept that. In many cases they are, but sometimes they aren’t, so they should always be informed of that. When we don’t have those conversations, we simply aren’t accounting for their perspective about what they want out of care. 

That’s why, in the case of pathways, it depends on how they are implemented and used. If they are only a tool for controlling utilization, then that’s not very patient-centered. However, if they are a way of leveling out the way our system currently incentivizes the use of higher cost drugs—which does not work in favor of the patient—then that could be a way for pathways to improve care delivery for sure. 

How can the development of pathways be more patient-centered?

There should be transparency about what pathways are and how they are developed. I know that ASCO has had a series of meetings earlier this year that I attended along with a number of other patient advocates where they are thinking about how they can be an honest broker of pathways, perhaps in the form of a seal of approval. And that was an interesting conversation, even though it was mostly patients and providers in the room. It would have been nice to get a payer perspective on this issue. 


1.     Henley SJ, Singh SD, King J, et al. Invasive cancer incidence and survival--United States, 2011. MMWR Morb Mortal Wkly Rep. 2015;64(9):237-242.

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3.     Bluethmann SM, Mariotto AB, Rowlan JH. Anticipating the “Silver Tsunami”: Prevelance trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomarkers Prev. 2016;25(7):1029-1036.

4.     Auchincloss SS. After treatment. Psychosocial issues in gynecologic cancer survivorship. Cancer. 1995;76(suppl 10):2117-2124.

5.     Wenzel LB, Donnelly JP, Fowler JM, et al. Resilience, reflection, and residual stress in ovarian cancer survivorship: a gynecologic oncology group study. Psycho-Oncology. 2002;11(2):142-153.

6.     Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer J. 2006;12(5):432-443. 

7.     Nahleh Z, Pasillas R, Dwivedi A, et al. Improved outcome of breast cancer survivors participating in a multidisciplinary cancer survivorship program at Texas Tech University Health Sciences in El Paso, TX. In: Cancer Research. Presented at: 37th Annual CTRC-AACR; December 2014; San Antonio, TX. Abstract P1-09-14.

8.    HR 2846—114th Congress. Planning Actively for Cancer Treatment (PACT) Act of 2015. Accessed September 21, 2016.