Chapter 12: The Survivorship Initiative

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Chapter 12: The Survivorship Initiative

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In this segment Dr. Rodriguez talks about MD Anderson Survivorship initiative, which began to take shape, she explains, after the Institute of Medicine released its presidential report From Cancer Patient to Cancer Survivor: Lost in Transition (November 3, 2005). This report, she says, detailed why care for survivors was lacking. Dr. Margaret Kripke, PhD [Oral History Interview] had been appointed to the president’s Committee on Cancer and became aware of the issues. She brought this information to the president of the institution, Dr. John Mendelsohn, who decided to integrate survivorship into MD Anderson’s care delivery system. A committee was formed and Dr. Rodriguez took on implementation of their plan in 2006. Dr. Rodriguez notes that MD Anderson began transitioning patients to survivorship in 2010. There is now a significant body of patients and Dr. Rodriguez says her next step is to leverage the information that has been collected. Dr. Rodriguez explains the process she and her committee went through to determine how to implement survivorship care, a process that began with listening closely to all constituents. She summarizes: they build the survivor care clinics in the same way they build acute care clinics. Next Dr. Rodriguez sketches why a focus on survivorship was controversial when it was first proposed. She touches on bond that forms between the patient and the physician and notes that a primary concern was survivorship programs would ask the patient to divorce him/herself from the main oncologist. Dr. Rodriguez notes that this break can sometimes be more painful for oncologists, who say they enjoy seeing well patients –often the high point of their day. Dr. Rodriguez explains that they finally settled on a model where one supervising physician determined the activities of mid-level providers in a situation that de-escalates the intensity of visits by focusing on wellness. Dr. Rodriguez sketches the approach. She notes that a key issue they had to consider: at what point does the primary oncologist see the patient as a survivor? This question will be answered differently in each treatment area and the committee built algorithms to determine the transition point to survivor care, when the risk of relapse is nil. The entire care model for each service is built around four common domains: Surveillance, Prevention, Monitoring for Late Effects, Psychosocial Health. Dr. Rodriguez explains how this model works using the example of lymphoma. She confirms that all the survivorship services are amassing a great deal of knowledge about survivor care.

Identifier

RodriguezA_02_20150306_C12

Publication Date

3-6-2015

Publisher

The Historical Resources Center, Research Medical Library, The University of Texas Cancer Center

City

Houston, Texas

Topics Covered

Building the Institution; Building/Transforming the Institution; Multi-disciplinary Approaches; Growth and/or Change; Patients; Patients, Treatment, Survivors; Dedication to MD Anderson, to Patients, to Faculty/Staff

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

Disciplines

History of Science, Technology, and Medicine | Oncology | Oral History

Transcript

Tacey A. Rosolowski, PhD:

And would you like to talk about survivorship in detail now? I mean, that’s certainly a really important topic.

Alma Rodriguez, MD:

Sure.

Tacey A. Rosolowski, PhD:

Or, would you like to continue with the administrative story? Up to you.

Alma Rodriguez, MD:

No. I’m happy to do that.

Tacey A. Rosolowski, PhD:

Talk about survivorship? OK, great. So how did—how did that survivorship initiative begin?

Alma Rodriguez, MD:

Well, for—I’m not quite sure how the Institute of Medicine—where it began for the Institute of Medicine. But as an organization, one of our prior leaders, actually our first female leader at the executive level, Dr. Margaret Kripke, was appointed to the President’s Commission on Cancer. And at that level, she began to interface with other leaders at the national level, and became aware of the issue of cancer survivors. Mr. Lance Armstrong, at the time, was a member of that commission as well. And he has been—was a much well-known advocate for cancer survivors at the time. So Dr. Kripke was very intrigued by this concept, brought it back, shared it with our President, Dr. [John] Mendelsohn, and shortly after that, the Institute of Medicine report was published. It was published in 2005, and it’s called, From Cancer Patient to Cancer Survivor: Lost in Transition, and that’s a heading, Lost in Transition, really is the main message of that report, and that is that patients felt they were lost as they transitioned from having been under the care of an oncologist and being treated for their cancer. Once that experience was over and they tried to reintegrate into a more normal life, they felt that they were lost and excluded, because the health community did not want to take them on as patients. Sometimes the primary care providers were afraid of assuming responsibility for the care of these individuals, because they felt, you know, once you’ve had cancer, God only knows what will happen after that.

Tacey A. Rosolowski, PhD:

Right.

Alma Rodriguez, MD:

They didn’t want to take responsibility for that, for the care of that individual. Or the patients, worst yet, had lost their insurance, which, by the way, was very common, and therefore, they could not access health services, even if they wanted to, even if there was somebody willing to take them on as patients. They couldn’t. They didn’t have insurance. Many lost their jobs, and that’s very well-documented. A diagnosis of cancer is one of the medical conditions that’s most likely to result in bankruptcy. It is one of the conditions that has the highest rates of divorce as the consequence, and therefore, sometimes in a marriage, one partner was the insured partner and if the other individual, the uninsured partner was the cancer patient, well, there goes the insurance once they’re divorced. So there are many—there were many difficulties that cancer survivors were facing. So this was made public knowledge, so therefore, again, our President, Dr. Mendelsohn at the time, felt that it was important that we integrate cancer survivorship as into our care delivery system. So he charged a committee to take this on. I was not part of that initial committee that formulated the proposal to him. But I was asked to take it on when the implementation phase was deemed to be the right time. Dr. Burke was the Physician in Chief at the time, and he asked that—he delegated that responsibility to me.

Tacey A. Rosolowski, PhD:

And that was in 2006?

Alma Rodriguez, MD:

Correct. So we formed a steering committee, first of all, multi-disciplinary. We began to map out how we would do this. Certainly it was far more than I could handle on my own, so I requested that I have a true operations expert person to help develop this. So we did. And the person who really was instrumental in doing the front-line work, if you will, the operations work, her name is Fran [Frances] Zandstra, she just retired.

Tacey A. Rosolowski, PhD:

Fran—

Alma Rodriguez, MD:

Zandstra. Z-A-N-D-S-T-R-A. She had been the clinical administrator for several clinics; she then had been a Director for Patient Affairs. She was very knowledgeable about how the Institution worked. She had a network of friends and colleagues in the Institution that knew her and respected her. She was very patient, centered in her approach to things. So she and I partnered in this initiative, and kind of building the model and the implementation of the process. And what seemed to work best, again, part of the listening mode and being in the front lines, part of what we learned to work. So we held focus groups, we got input from providers, we got input from patients and their families. In the end, what we heard both the providers and the patients tell us was, the patients were accepting of the idea that maybe their focus—the focus of their care was no longer going to be necessarily the cancer itself. And in fact, many of them welcomed that it would now be more wellness and prevention. But they did not want to separate from their clinics. They wanted to feel that their oncologist, or the community of oncologists who were expert in their disease, were still linked to that survivor care. So we built the survivor care clinics in the same way that we built the acute care clinics; in other words, the Breast Center had their own breast survivor clinics, the Gynecological Oncology Center has their own gynecologic survivors clinic. Head and Neck has their own head and neck survivor’s clinic, etc. We did find, however, that some clinics really were pressed for space; so, for example, the Thyroid Center felt that they were very cramped for space, and they would welcome transitioning their survivors to a different space. They still wanted to remain linked in providing the services, so they would assign who would go to the survivor clinic, but they couldn’t do it in their own space. So they transitioned their patients to the Cancer Prevention Center, which had a lot of space at that time.

Tacey A. Rosolowski, PhD:

Can I ask a question?

Alma Rodriguez, MD:

Mm-hmm [affirmative].

Tacey A. Rosolowski, PhD:

When this report came down, and John Mendelsohn and then the committee kind of began working and the Institution began to understand this was going to be added to the pallet of care delivery, was it controversial? I mean, what—

Alma Rodriguez, MD:

Yes.

Tacey A. Rosolowski, PhD:

Why?

Alma Rodriguez, MD:

The controversy was that we were, first of all, we were saying the care for these patients is no longer about their primary cancer. So first of all, having had cancer A doesn’t mean that you’re under the threat of cancer A for the rest of your life. In fact, you maybe at higher risk of cancer B or cancer C as you grow older. So that was one message, you know, bringing to awareness of the primary oncologist that, you know, guess what? The disease that you treated and the care for this patient is no longer the focus of this patient’s life, or should no longer be the focus of the care of these patients, moving forward. So that’s a little bit of a threat, right? But the other more important issue is that we were asking people to, for lack of a better word, divorce themselves from their oncologist. And so, there is, you know, the reason the so-called model of the dyad of the doctor-patient relationship has lasted for such a long time is that that is very inherently basic to human psychology; you know, the healer-healed person relationship. You know, it’s been talked about extensively in psychiatry and psychology, and it’s real. I mean, there is a bond that forms between the Physician and the patient, and particularly in a situation where the patient perceives that their lives have been saved by this individual. And so it is very emotional, it can be very emotional. It can be difficult, both for the patient and the Physician. We found that in some cases, it wasn’t necessarily so difficult for the patients, again, as long as they knew it was within the same clinical environment where they were cared for before, but in fact, it was more traumatic for the Physicians because they felt that seeing these patients who are well from the perspective of the cancer, who had survived the cancer and were still free of the cancer, that that was the height of their day, that was the most enjoyable part of their day, and we were going to deprive them of that. So that was a challenge, the psychological separation. The other challenge was, like I said, the operations, you know, where do we find the space? Where do we find the rooms? Who is assigned—who is going to be assigned now to do survivor clinic? Will it be one of the Physicians within the clinic, or will it be mid-level providers? Or will it be a Physician supervising several mid-level providers? In the end, it really was more of a model of a supervisory Physician with multiple mid-level—with mid-level providers; sometimes multiple, sometimes one or two at most, depending on the volume of patients’ transition. But it became clear that really, one of the benefits of the survivor care model is that you can deescalate the intensity of the visit to being more health-oriented. And again, remember what I said about Physicians are not always the most well-trained in health and motivation training. Sometimes the mid-level providers and nutritionists and social workers—so we built partnerships of this other tier of providers, who could then help the patients maneuver through these others issues.

Tacey A. Rosolowski, PhD:

So tell me about the stages in setting that up, I mean, like, kind of—I’d like to get kind of more of a portrait of how the survivorship initiative at MD Anderson works.

Alma Rodriguez, MD:

So we started off, of course, doing pilots in a couple of clinics, first of all to test the model to see if it was feasible.

Tacey A. Rosolowski, PhD:

And just for clarity, was this a model that you adopted from somewhere else and then tweaked, or—

Alma Rodriguez, MD:

We designed it.

Tacey A. Rosolowski, PhD:

You designed it. OK.

Alma Rodriguez, MD:

We designed it to fit, like I said, the psychology and the structure and the operations of our own organization. And being that we have multi-disciplinary disease-specific clinics, and that the patients felt most comfortable in that closeness to their primary clinic, we built the survivor clinics for each disease group for patients with certain categories of disease within that same group. So in gynecology, for example, we built a gynecology survivor clinic in the Gynecology Center. How we would start off is simply by looking at their patient populations and saying, you have X-number of patients who come to your clinic on a yearly basis. We notice that X-number of these patients have not had any treatment for the last three to five years. Would you not consider these patients to be well?

Tacey A. Rosolowski, PhD:

Oh, OK.

Alma Rodriguez, MD:

And to be survivors? We didn’t say immediately upon completing chemotherapy you must transition them to survivor, that’s not what we said. We said at what point do you, the clinicians, consider it safe to transition to survivorship? So remember I said that we took into account both patients’ opinions and the doctors’ opinions; the doctors’ opinions were, OK oncologic care does not end, really, cancer care doesn’t end until the patient has reached a point at which the risk of relapse is fairly minimal to nil. That’s when it’s safe for me to say, “You’re a survivor.” So that’s what our community said. You know, and I can talk about what the national discourse is from the Affordable Health Care Act perspective. But from our providers’ perspective, it was, we’re not done until we’re sure that your risk of cancer is minimal. We want to continue to follow you through surveillance. So again, the cancer care continuum—and there’s my little diagram—what we’re speaking of is, once treatment ends, it ends here. But we have to keep watching for potential risk of relapse. You’re under what we call a surveillance period for potential recurrence of your illness.

Tacey A. Rosolowski, PhD:

Would it be possible for me to have a copy of that?

Alma Rodriguez, MD:

Sure.

Tacey A. Rosolowski, PhD:

I can put it right into your transcript.

Alma Rodriguez, MD:

Oh, OK.

Tacey A. Rosolowski, PhD:

Yeah.

Alma Rodriguez, MD:

And you know, for some cancers, that period of risk of relapse may be very short. It may be a year. So maybe the patient can be considered well, and we can bless that they can transition to survivorship in a year. But for other diseases, it might be five years. For some it might be ten years. We don’t know. I mean, so which is why we delegated that responsibility and accountability for determining the time point of appropriateness of transition to the primary providers. And we said it has to be risk-based. So to do that, they built what we call algorithms of transition. So for disease X, when would be the appropriate time point to transition? For disease Y, what would be the appropriate time point for transition? And then we built the actual care model. So in other words, you’re not just going to toss your patients out there. You have to tell us what are the key care domains, or elements without four domains—we built the domains based, again, on the Institute of Medicine report. So first of all, you have to do some aspect of surveillance for second cancers. You also have to do prevention in early screening. You have to monitor for late effects of the chemotherapy or radiation or surgery, because unfortunately, those will happen and some patients may be at higher risk than others. So we call that a late effects monitoring. And then lastly, psychosocial health. Did these individuals get back to work? Are they OK mentally? Are they chronically depressed? Chronically anxious? What is going on in their lives? So those four domains of surveillance, late effects management, cancer preventions and psychosocial health, those four key areas had to be addressed in every single algorithm. But it was up to the disease sides to tell us what do we put in those boxes. So in breast, for example, under the psychosocial domain, body image was one of the aspects of psychosocial health that sometimes can emerge as an issue in the patient’s mental health. I treat patients with lymphoma patients, they sometimes, particularly if they had radiation in the chest area or in the neck area, they sometimes can develop hypothyroidism later on. So monitoring thyroid function as a late effect was really important, and so on. I’m just giving you those as examples, that each disease category has its own potential late risks, potential consequences from the treatment and from the disease itself. Patients who have had head and neck cancers, for example, are at risk for developing other head and neck cancers. So they have to have a certain type of exam done on a yearly basis, so that they get completely checked to be sure they are not developing other late second or third oral cancers. So there’s all of these disease-specific knowledge that we built into these models of care. So the providers feel comfortable, I’m not just sending these patients to a clinic where somebody’s going to say, “Eat vegetables.” That’s not it. They’re going to have, you know, a delivery of care that is aligned with these concerns that need to be addressed downstream.

Tacey A. Rosolowski, PhD:

I’m kind of seeing, and tell me if this is the case, that charging each one of the disease areas with this kind of activity also perhaps meant it was asking them to regularize and accumulate their knowledge in a systematic way—

Alma Rodriguez, MD:

Correct.

Tacey A. Rosolowski, PhD:

—that maybe was different than what they had done before.

Alma Rodriguez, MD:

Correct.

Tacey A. Rosolowski, PhD:

Did the individual disease area see this as valuable? Has that activity itself had an impact on the Institution?

Alma Rodriguez, MD:

Well, as many years as now we’re in this process, we really didn’t begin to transition patients in significant volumes until 2010.

Tacey A. Rosolowski, PhD:

Oh, OK. Wow. So there was a long set-up time—

Alma Rodriguez, MD:

Correct.

Tacey A. Rosolowski, PhD:

—exactly to create all that body of information.

Alma Rodriguez, MD:

Correct. Correct. So since 2010, however, we now have, I think, a significant body of patients, volume of patients transition that we—that’s my next agenda item, if you will.

Tacey A. Rosolowski, PhD:

Sure.

Alma Rodriguez, MD:

Let’s start to strategically utilize this information, this data, to assess where are we today? What have we learned from our survivorship model of care? And what should we change? Or is it optimum as it is? Or how can we continue to improve it?

Tacey A. Rosolowski, PhD:

Do you have any inklings of this at this time?

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Chapter 12: The Survivorship Initiative

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