M. Alma Rodriguez, M.D.
Vice President, Medical Affairs
Survivorship Program Executive Sponsor
The University of Texas, MD Anderson Cancer Center
Hello. My name is Alma Rodriguez. I am a physician at MD Anderson Cancer Center and the Vice President for Medical Affairs. I have had the privilege for these past few years of leading an initiative at our institution to develop a concerted effort and a uniform program for the health care of cancer survivors.
Why is cancer survivorship an important issue for us? The unfortunate reality is that cancer is a very common health concern. It is second only to cardiovascular diseases in terms of risk of mortality, and one in two men will have a cancer lifetime risk of developing malignancy. The frequency of the malignancies that are evidenced in men are as listed in this slide, starting with prostate, lung and bronchus, colon and rectum, urinary bladder, and Non-Hodgkins lymphoma being the top five diagnoses.
In women, the cancer risk is one in three for a lifetime. And leading the categories is breast cancer, followed, just as in men, by lung and bronchus, colon and rectum, and instead of bladder malignancies, in women, it is uterine corpus that is fourth in rank, followed by Non-Hodgkin's lymphomas, just as in men.
The number of patients who will survive their malignancy five years or longer has been continually rising over the last four decades thanks to a number of innovations in the therapeutics of cancer. In 2007, according to the National Cancer Institute statistics, nearly 12 million persons had lived five years or longer from their diagnosis of cancer.
In addition to the increasing number of survivors, other factors that have influenced the perspective on cancer care for survivors are several. First of all, a number of prominent individuals have been very open about their experience as cancer survivors. For example, Mr. Lance Armstrong, a noted athlete, built a foundation with the intention and the focus of increasing awareness to the needs of cancer survivors and to put pressure on research and policies for the benefit of survivorship health care. At the same time, the Institute of Medicine and the National Research Council for the National Academies had charged a study on the needs of cancer survivorships, on the needs of cancer survivors. The result of the study was published with the title, "From Cancer Patient to Cancer Survivor: Lost in Transition." As the title implies, cancer patients often become lost in transitioning from their acute phase of care to their long-term survivorship care. This is due to a number of factors, from poor communication between the oncologist and the community providers to a number of social pressures, from loss of insurance, disruption of relationships, loss of employment, and a number of other factors that impair good healthcare. This study was followed by a subsequent publication called "Cancer Care for the Whole Patient: Meeting Psychosocial Needs." In this subsequent study, the need of survivors for psychosocial health in addition to medical health was stressed.
To talk about cancer survivorship, we have to begin at the beginning, and that is, "who is a cancer survivor?" The National Cancer Institute Office of Survivorship, in fact, developed an official definition in 1996. It is a very comprehensive definition. As opposed to the more common or public perception that cancer survivors are only those that live a long time after their cancer, the official definition actually states that it is an individual who has been diagnosed with malignancy. And this individual would be considered a survivor from the time of diagnosis through the balance of his or her life. And in addition, family members, friends and caregivers are also included in this definition. So this is a very broad perspective of what survivorship means.
As you can see, the formal definition for a cancer survivor is quite broad and encompasses the entire cancer journey from diagnosis to the end of life. Therefore, we must acknowledge then that there are different stages or phases of the survivorship journey. This is not a new concept. Actually, it was in 1985, Dr. Mullen, who himself was a cancer survivor, published on his experience as a cancer patient. The title of his publication- of his article was "Seasons of Survival". In this article, he summarized or he described that there were different or very distinctive experiences to what he called phases of the survivorship journey. First of all, there is an acute phase of treatment that begins with the diagnosis of cancer. During this period of time, the patient and the providers are focused on testing for the diagnosis, as well as, the treatment of the cancer. This is followed by what he called the intermediate phase of survivorship, which begins once the patient has reached remission and the treatment is concluded – or I should say the acute phase of treatment is concluded. Often, upon completion of the treatment, many patients face additional, although usually less intensive treatment. This may be called maintenance or consolidation therapy, although most patients are simply in what we call a watchful monitoring stage. Eventually, and hopefully, the patient lives through the period of highest risk of recurrence of the malignancy and enters what is called the long-term survivorship phase. In this phase, the patient then begins to more formally integrate back into normalcy. Although many patients find that indeed there is a "new normal" for their life as they may be suffering from late side effects or latent side effects of their treatment or of the cancer itself. For these patients, it is expected or hoped that they will be cured or that they will sustain a very long remission.
If we are to outline or summarize the medical and psychosocial concerns of each of these phases, it would be that during the acute phase of treatment, the focus from the perspective of the physician is on delivering and designing an effective cancer treatment program for the patient, and the patient has to focus on managing side effects of the treatment, the physical and psychological discomforts of the treatment. In the intermediate phase of treatment, the physicians are monitoring for evidence of disease recurrence through a number of diagnostic studies. Whereas the patient is focusing on rehabilitating and integrating back to life, and at the same time, managing their fear or concerns about recurrence of the malignancy. In the long-term phase of cancer treatment or post-cancer treatment, the clinicians essentially now shift their focus on monitoring for potential late consequences of the treatment, late side effects, and possibly secondary primary cancers not related to the first malignancy, and in some situations, rare late relapses. On the patient side, the burdens of economic hardship or perhaps social and psychological hardship will emerge: loss of insurance, loss of employment, disruption of relationships, and dealing with self-image that may have been altered depending on the categories or types of treatment the patient received.
What are the characteristics of those persons that today are cancer survivors, and by cancer survivors, we would mean longer than five years, reverting to our long-term survivorship definition? Nearly two-thirds of the long-term survivors today are 65 years of age or older. Nearly 40% are in the age categories of 20 to 64 years, which we would consider to be the working adult population. Therefore, it is very important how we formulate policy for healthcare and insurance of these patients. From 2000 to 2050, it is projected that persons age 65 years of age or older who have survived cancer will nearly double from the number today. This is an important issue as many of these patients will have higher frequency of concurrent illnesses. And in addition, in this environment of shifting medical policies, we must be mindful that the healthcare and long-term consequences of cancer care are included in the design of treatment policies for these patients.
The most common diagnoses among the current survivors are breast, prostate, and colorectal, not surprisingly, as the three most common malignancies in men and women. This is followed by gynecologic malignancies and hematologic malignancies. Noting, as you will note in this slide, lung cancer survivors are unfortunately not in these top five categories, even though lung cancer is the second most common malignancy in both men and women.
If we are to address the healthcare needs of survivors, we have to take into consideration that not all survivors are the same. The needs of patients — or the medical healthcare needs of patients will be dependent in part on whatever treatment they received. There are different surgical interventions indicated for different malignancies, radiation treatment dosing and ports are different depending on the location and category of malignancy, and certainly chemotherapeutic interventions are unique for each of the malignant diseases. These will differ, not only depending on the stages within each of the categories of cancer, but they also depend on the characteristics of the patients themselves at the time they begin treatment. Hence, the expected long-term potential side effects on the short, as well as the long-term will be unique to each of the patients' situation and condition.
If we also look at the charge by the Institute of Medicine that we consider a comprehensive approach to the healthcare needs of survivors, we have to take into account, then, several categories of care. First of all, the patient will be concerned about a potential recurrence of their primary cancer, but equally of concern is the possibility that the patient might develop a second or even a third malignancy. Having survived one cancer does not mean that the patient is not at risk for all the other common categories of malignancy. The physicians who most -- would be most appropriate to deliver this category of care would be oncologists and/or internists. A second category of healthcare is cancer prevention, which includes lifestyle changes, as well as, assessment from a genetic and other perspectives of the risk assessment for that patient. This is best done by cancer prevention specialists and geneticists who can assess cancer risk based on genetics.
The management of potential side effects of the treatment on the short- and long-term, of course, lie within the realm of internal medicine as well as oncology. The patients must be encouraged, educated and assisted in health maintenance and long-term observation of vital organ function. Lastly, but equally important, is quality of life. In this category of support, the patients will need services to maintain -- to assist them in maintaining healthy relationships and reintegration to life. In this category we have a multitude of specialists such as social workers, psychologists, psychiatrists, spiritual counselors, and even peer support groups, that play a significant role.
At MD Anderson, we are developing a concept of multidisciplinary care integration when we deliver these services. First of all, as a first objective, we must coordinate multidisciplinary cancer care by integrating the services, both physically as well as politically, if you will. We must focus on specific diseases or disease sites because, as I noted, a survivor of breast cancer is not the same as a survivor of colorectal cancer. They will have different special disease-driven and treatment-driven needs. Lastly, we also integrate supportive services, and in addition, research and education efforts.
The principles of care delivery in multidisciplinary care are as follows: The patient should be the central focus, that is, patient-centered care. The approach by the providers is to work together as a team, and therefore, communication is very important. Communication has to be proactive and information should be transparent and accessible. All of the various participants in the multidisciplinary care model are accountable for their work, but they are also accountable to each other. And decisions are made at the point of service, that is, as the patient is seen in the clinic, as frequently as possible. Lastly, within the infrastructure of the delivery system, there should be links to supportive care as well, not just medical care delivery.
To standardize the care delivery, as well as, the structure of the services, our motto is to develop standardization of practice tools: order sets, algorithms of care, and practice guidelines, with an underlying evidence-based approach. The healthcare team partnerships are across different levels of expertise and include physicians, mid-level providers, nurses, trainees, as well as, administrative support staff. We also integrate as much as possible multidisciplinary planning. This is true of our -- very, very true of our acute care center or acute phase of treatment and our goal is to continue this same process model into survivorship, that is, reviewing cases and coordinating treatment by open discussion.
In the acute phase of treatment, we have a very well developed model of system at MD Anderson, and it includes the key oncologic specialists: Radiation Oncology, Surgical Oncology, and Medical Oncology, all seeing patients within the same physical infrastructure of a clinical center. Working together with these specialists are clinical and research nurses, social workers, trainees, other mid-level providers, and patient advocates.
Transitioning this same model of multidisciplinary care to the long-term phase, we bring in other categories of specialists. For example, psychosocial counselors, genetic specialists and cancer prevention specialists, as well as internists who can assist the oncologist in management of organ toxicity. We continue to be supported and integrate clinical and research nurses, social services, mid-level providers, trainees, and patient advocates.
The advantages of such a collaborative approach are that the patients benefit from the expertise of a variety of healthcare professionals in various disciplines, all working together in one site. In addition, the staff learn from each other regarding best practice standards and novel approaches to therapy. This also facilitates collaboration in research initiatives and it provides training opportunities for the up and coming new health care professionals for the future.
In our program, we began by developing a mission statement. Our mission at MD Anderson, in a Survivorship Program, is to address the outcomes of cancer and its therapy, to improve cancer survivors' health and quality of life through integrated programs in patient care, research, prevention, and education. Our positioning statement is that we will seek to position ourselves to be the benchmark for cancer survivorship programs in cancer-designated centers.
The structure of our care model is that it is based on oncologic care and mirrors the acute care model. And that is, that we bring in, in an integrated fashion, within a physical location, multiple disciplines. The additional specialists that we bring in, into the model of care would be psychosocial specialists, cancer prevention specialists, socioeconomic counselors, and internal medicine specialists.
As I have noted, the consequences of cancer and their treatment are variable, depending on the intensity and category of treatment the patient has received. In acknowledgement of this, we have developed a model for the tiers of medical risk for long-term survivors. Tier 1 includes patients who have a very low risk of complications of relapse or risk of complications of treatment. This includes patients who maybe had a surgical intervention that was not disfiguring or that did not include major physiologic disruption to the body. This might be patients who, for example, had a very localized superficial colorectal malignancy and had only a short segment of their bowel resected. Patients in this category will require prevention, counseling, and monitoring for possible late sequelae – or monitoring for subsequent malignancies, but may not necessarily need complex internal medicine monitoring for organ toxicity. Whereas patients in the Tier 2 category are those that have received more complex treatment strategies, usually of multidisciplinary care. This includes patients who maybe received -- had radiation and received as well chemotherapy and radiation. At MD Anderson, this constitutes the largest category of our survivor population. Patients in this category will indeed be at somewhat increased risk of second, late malignancies, and may face also acute or late toxicity to various organ systems. For example, patients who have received doxorubicin and/or radiation to the thorax may face later higher risk of cardiovascular disease. These patients will require not only prevention and psychosocial support services, but they also will need to have healthcare through our internal specialists and may even, depending on their situation, require ongoing monitoring by their oncologist. The highest risk category is those in Tier 3. These are patients that we know will face either consequences of their malignancy or their therapy. In this category, we include patients who are at high risk of relapse of their primary cancer, patients who are living with their cancer in a chronic or controlled phase, or patients who have had very intense treatment such as a stem cell transplant that we know is associated with many side effects. These patients will require a spectrum of services across the continuum of all the specialties we noted: cancer prevention, psychosocial services, internal medicine specialists focused on specific organ systems, and the medical oncologists to continue to manage, or help the patient manage their malignancy.
To reiterate what I have noted previously again, with regards to the components of healthcare in survivorship, these include cancer surveillance and screening, that is, detection and treatment of late recurrences of the primary cancer or detection of new second malignancies; counseling for risk reduction and cancer prevention, such as lifestyle changes to prevent risk of malignancy; monitoring and management of late effects of treatment that may have resulted in toxicity to organ systems. The patients must be encouraged and assisted by physicians to maintain health and to observe for life, vital organ function. Lastly, quality of life with psychosocial or supportive services to assist the patient in maintaining healthy relationships and restoration of a normal life.
This effort began really with the highest level of support from the institution. The President of the institution himself, Dr. John Mendelsohn, charged our Executive Vice President and Physician-in-Chief, Dr. Burke, to charge individuals within the institution to charge the clinicians within the institution with the development of this plan. I have had the privilege of leading the Steering Committee that is working on this initiative, and we have several components in this initiative addressing each of the elements I have noted: Clinical Care, Supportive Services and Outreach, Education, Research, and the important Business Planning which addresses infrastructure and operational needs.
We have initiated what we call pilot clinics, that is, in a small scale, and within established clinical centers, we began a process, first of all, of engaging the leadership within each of these areas of discipline – within each of these centers. And we charged them then with strategically analyzing their operational infrastructure needs, the development of -- and analysis of the categories of survivors that are within their center based on our tiers of care model, and then potential research needs that they will face in the future.
We began, as I said, first of all, with an endorsement – or seeking endorsement from the leadership of each of these disciplines, from the chairman of the group, as well as any medical leaders within the group, and they form a Disease Site Steering Team which will essentially be the core group that is going to within that center lead that effort. The clinicians formally initiate a literature review. They develop multidisciplinary analysis of care delivery. They define the categories of patients that they would like to transition to long-term survivorship. They design evidence-based guidelines and algorithms. And they also design what we call the Passport Plan for Health, and I will discuss that later on. They also participate in the development of patient education materials.
On the infrastructure analysis side, we first of all look at space, staffing availability, and a communication plan so that the staff within that center, as well as the physicians and the patients seen in that center, are aware that this program is in the process of development. Lastly, we also design a Metrics of Care analysis tool with the intention that we are going to look at the success of this process on the basis of outcomes of the process.
Just to give you an example, I know this is a very busy slide and you cannot read the detail, but I just wanted to impress upon you that the clinicians do develop – or devote a great deal of attention to this process. In the Gynecologic Oncology Center, for example, the clinicians detailed for cervical cancer, uterine cancer, and ovarian cancer, the unique characteristics of these diseases and the unique needs that the survivors of these diseases would have. Each of these groups has some common aspects of healthcare delivery, but they also have unique aspects of healthcare needs that will then distinguish each of them and that will drive the development of guidelines of care, specific to each of them.
This is an example of the survivorship algorithm of care for endometrial cancer. I want to bring to your attention that within each of these algorithms of care, we require a formal definition of each of the four domains of care, that is: surveillance of malignancy; risk reduction and early detection; monitoring for late effects; and quality of life.
The specialties have also developed, for each of their respective malignancy types, if you will, supportive algorithms of care. That is, when an anticipated complication is – or when it is anticipated that a given complication will commonly occur in those patients, they have also focused on developing algorithms of care for those complications. For example, bone health is important in gynecologic cancer survivorship, as many patients will undergo early menopause as a consequence of their treatment, and therefore, they will be at higher risk of bone loss or osteoporosis. This bone health algorithm guides the clinicians to pay attention to maintaining bone health for the patient.
I stated that, as part of our clinical care, we also develop a formal summary document called the Passport. This document details the treatment the patient received as well as a recommended plan for follow-up. And this document serves both to communicate -- for internal communication among the various providers taking care of the patient, but it is also to be used by the community physicians.
This is just to demonstrate the structure of the document. On the left-hand side is the summary page. On the right-hand side is the page that defines the recommended follow-up studies and recommendations or educational materials provided to the patient and recommendations for the community physician.
Community physicians and the patients themselves can access this document through a website called My MDAnderson. On the left-hand side of the web page you will see a list of the various categories of documents included in that page.
Under survivorship, the patient and the provider can see the document that specifically details that patient's most recent care summary.
The patients are also given what we call a survivorship award when they are deemed to be ready to transition to long-term survivorship, the oncologist informs the patient that they will be transitioning to long-term care survivorship and will present them with this award. While it may seem to be a small gesture, many patients have told us that, to them, this is a --, if you will, a landmark of triumph, and they have been very appreciative of having this acknowledgement.
We have also developed a number of educational tools for patients, including a nutrition guide, a sexuality and cancer guide, as well as summaries, in general, of what to expect in their long-term survivorship care clinics.
We have also developed a portal of information for the public as well as providers outside of MD Anderson. It is our cancer survivorship web site.
In general, the metrics that the centers have been interested in for their pilot clinics include: the satisfaction of the patients with their transition to the long-term survivorship care model; the satisfaction of the clinic physicians with the model; how many patients were transitioned; the services used by the patients; whether the patients were referred to appropriate surveillance screening - and we monitor that through our passport tool; how many passports were issued to the patients and to the community providers; and how satisfied were the community providers with the services and with the information given to them.
In summary, I hope that I have conveyed the following messages clearly. The number of patients who will survive cancer at least five years or longer in the United States continues to grow. The clinical care needs of survivors will differ among the different diagnoses of malignancy. It depends on the primary tumor type and the complexity of treatment that the patient received. The care of survivors really cuts across multiple disciplines and includes several areas of focus, including: tumor surveillance for possible late malignancies – or late second malignancies or late reoccurrences of the primary malignancy, cancer prevention, management of late side effects, and psychosocial health. The integration of these various disciplines requires, first of all, support from the leadership of each of the institutions that implements or engages in this effort. It also has to have engagement from the clinicians that deliver the care and you must also be mindful that certain infrastructure and operational needs are essential for the success of such services. Thank you for your attention.
Models For Multidisciplinary Cancer Survivorship Care video
©2010 The University of Texas MD Anderson Cancer Center
1515 Holcombe Blvd, Houston, TX 77030
1-800-392-1611 (USA) / 1-713-792-6161