This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and public policy makers; develop guidelines and disseminate information; advocate for increased research funding; and articulate for and promote survivors’ rights.”
In 1995, NCCS published “Imperatives for Quality Cancer Care,” an influential publication that represented a new approach to defining quality cancer care from the patient perspective. Throughout 2015, the 20th anniversary of the Imperatives, we have revisited the issues and measured the progress made in twenty years of advocacy through a special series of videos, guest posts, and commentaries. For the final post in the series, Dr. Julia Rowland, the current Director of the Office of Cancer Survivorship, discusses the history and impact of the Imperatives document, the progress made in cancer survivorship in the last 20 years, and some of the current challenges the field of survivorship faces. The video is split into three parts.
Part One: A History of the Imperatives Document
VIDEO TRANSCRIPT:
“In some ways, people look back and say, ‘Twenty years later? The rest is history.’ We took off.”
I’m delighted to talk about the Imperatives for Quality Care, having been one of the co-editors of that important document. It was a series, actually, originally a white paper, as you probably already know that, with a variety of different professionals across the country contributing to pieces of that. A lot of us had input into it. A lot of us were clinicians and researchers working in the field as well as advocates to say, “What is happening, what isn’t happening, and where do we need to take the science?” That wonderful document, which Ellen [Stovall] very boldly took to the then-director of the National Cancer Institute, Richard Klausner, and said, “Rick, I think you need to read this.” And as the story goes, he took it on some flight, he was going overseas on travel, read through this, speed reader, brilliant mind, came back, didn’t even stop at “GO,” i.e. at his own institute. He went down to Congress and said, “I’m creating this office, this Office of Cancer Survivorship, because we need answers and we need you to be supporting the science that’s going to provide us with the information about what happens to people after cancer treatment.”
So, almost unilaterally, based on that document, he created the Office of Cancer Survivorship. There was a lovely Rose Garden ceremony in October of 1996, establishing the office. There’s a great picture of Bill Clinton signing the Ribbon of Hope, Ellen Stovall is there, Rick Klausner is there—a picture of which I have and I often want to trot out for new NCI directors to say, “See? See? We have this signed document, you know, make sure we’re putting moneys into the office!” And that was kind of the beginning of the attention paid within the [NCI] to survivorship issues, because it had not really been front and center for the Institute, and in some ways, people look back and say, “Twenty years later? The rest is history.” We took off. I often like to think that this office and this science is where the heart of the Institute is, because it’s all about the people who are touched by cancer and its treatment. The people, the families, the communities… we’re trying to figure out what that impact is and, you know, prevent adverse outcomes or mitigate them when they happen. So that’s really the driver behind the office. I’m very privileged… I’m not the original director, it was Anna Meadows, a fabulous world-class pediatric oncologist. In fact it’s been our pediatric survivors who have been the vanguard of the survivorship movement, because there we’ve had our greatest success stories. I came onboard as the first full-time Director in 1999, and I’ve been the Director ever since, which has been for me, a deeply humbling and privileged position to hold for these many years—to see this whole field really take off, starting with the Imperatives document.
Cancer survivorship now owns its own place on what we look at as the cancer control trajectory, that we often think of as starting with primary prevention, detection, treatment, and then we used to jump to end of life. And we’ve realized, no, the vast majority of people are going to have this very long period of living simply with a history of this—and may die of something actually unrelated to their cancer. Understanding what that long trajectory is, probably the longest in most survivors’ lives is going to be that period post-treatment—whether they have a recurrence and are retreated or not, that’s a very big block of time. So, it now exists as its own area of expertise and we have a lot more information about what are some of the kinds of problems that individuals face that patients used to come back and tell their clinicians about and be dismissed? “You know, doctor, I’m feeling tired and it’s three months since treatment ended, when is this going away?” “I can’t remember a thing.” “When’s my sex life going to revitalize?” “Will these pain syndromes resolve?” “Do I need to worry about another cancer, and if so what kind and what can I be doing about that?” “Am I at other risks for different kind of comorbid conditions—heart disease, bone health?” “What’s my life going to be like afterwards? What can I be doing about that?”
And I think we’re much more sophisticated now. I think we realize that those dialogues are important. Certainly, the Coalition [NCCS] with the redefinition of what it means to be a survivor from diagnosis to end of life has changed the dialogue. And we’ve seen that happen, so those conversations are happening now at the time of diagnosis, so people are making informed decisions. And we now are beginning to have the data to say how many might be infertile? And what are infertility interventions? Can we bring those forward? How many people may be at risk for fatigue and can we mitigate that? I think we’re seeing much more in the way of addressing those concerns and not dismissing them and saying, “Oh we don’t need to worry about that.” We do. That’s very much a part of care today.
Part 3: Survivorship Moving Forward, New Challenges
VIDEO TRANSCRIPT:
“[Caregivers are] an important part of care, and yet, we don’t really understand how to support them, how to best train, or educate them about what their role is, give them the skills that they might need to really help a loved one through a course of treatment and beyond.”
Things we know less about are now, “What is the appropriate medical care?” I think we’re struggling to try and figure out how do we care for these millions of individuals who happen to have a history of cancer and who are back in the healthcare system? What kind of followup do they need? Do we need to be doing something special for them or different from them? Can we, in this new wave of therapies that are being developed, develop less toxic treatments? I think that is a continuing focus, and a challenge for us. Are we going to answer it with molecularly-targeted agents? I don’t know. I think we don’t have the answer for that. But I do know that any of those new treatments, unlike in the past, aren’t going to be just taken out into the community, they’re going to be looked at in regard to their long-term effects. That’s because we now think about survivorship from day one and going forward. That’s a very different world in which we live.
Another growing area to be concerned about is caregivers. We’ve suddenly realized, “Oh my gosh! That was in the definition of survivor!” Caregivers are included in that definition of who constitutes a survivor. And we’re only just recognizing, you know, we’re not meeting their needs. They’re an important part of care, and yet, we don’t really understand how to support them, how to best train, or educate them about what their role is, give them the skills that they might need to really help a loved one through a course of treatment and beyond. And take care of their own health if they may be at increased risk. Big new area that we need to be thinking about.
And perhaps a final one that we know very little about… Surprisingly lots of research we’ve seen with young survivors, because that’s been our vanguard group, we actually know very little about older people who live with a history of cancer. Those 65 and older, it’s a gap area, it’s shocking because that’s going to be the fastest growing survivor group in the country because of the baby boom generation—and the fact that cancer is a disease associated with aging. We have really no data on what we need to be doing for older adults and their caregivers and their networks and their providers. What are we going to tell them about caring for themselves? About the care they should be pursuing? About what kind of interventions may be needed for them in particular? And how do we do that?
About the Guest:
Julia Rowland, PhD is the Director of the Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), at the National Cancer Institute (NCI). Since she assumed the position of full-time Director of the OCS in 1999, Dr. Rowland has sought to champion the visibility of and investment in cancer survivorship research both within the Institute and across other federal and non-governmental agencies, and to raise public awareness about the health and quality-of-life needs of the growing population of cancer survivors and their families.
The views or opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions or views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The Twelfth Principle states, “Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and public policy makers; develop guidelines and disseminate information; advocate for increased research funding; and articulate for and promote survivors’ rights.”
Meghan Gutierrez, CEO of the Lymphoma Research Foundation (LRF) sat down with us at our Cancer Policy Roundtable last month to talk about LRF’s patient tools and advocacy programs and how they have evolved to meet the needs of lymphoma and CLL survivors. To learn about becoming an advocate for lymphoma, go to lymphoma.org/advocacy.
VIDEO TRANSCRIPT:
The Lymphoma Research Foundation’s mission is to eradicate lymphoma and serve those touched by this disease. Over the past two decades, we’ve seen tremendous strides made in the treatment and understanding of lymphoma and CLL. Patients have more treatment options than ever before. We also know that patients really want their voice to be heard. They want to advocate, not only for their own treatment options, but they also want to advocate for greater investment for lymphoma research. They also want to ensure that they are being heard in the treatment development process.
As we’ve learned more about lymphoma and CLL, the foundation’s education programs have likewise needed to evolve. Our in person programs are still a primary way in which patients access disease-specific information produced by our foundation. But as information about lymphoma has involved, so have the ways in which we reach patients and their caregivers. This includes online content, webcasts, podcasts, webinars, teleconference, and even the development of the nation’s first ever lymphoma-specific mobile app, Focus on Lymphoma.
Over the past several years, we’ve seen an increase in the number of patients and caregivers who wish to make their voice heard as a part of the public policy-making process. Through the Lymphoma Research Foundation’s advocacy program, more than 5,000 grassroots advocates across the country have ensured that they make their voice heard in Washington, DC. A wide range of policy programs have encompassed our public policy agenda at LRF. Patients advocate for greater federal investment in lymphoma and cancer research. They’ve also sought to create a reimbursement mechanism for cancer care planning, which we know is so important for all cancer patients. They’ve also sought to educate lawmakers on oral therapies, on new treatment modalities for lymphoma patients, and access to new and novel targeted therapeutics for lymphoma and CLL patients.
About the guest: Meghan Gutierrez is Chief Executive Officer (CEO) of the Lymphoma Research Foundation (LRF), the nation’s largest non-profit organization devoted exclusively to funding lymphoma research and providing patients and health care professionals with critical information on the disease.
Gutierrez has focused her entire career in the government and philanthropic sectors, beginning as a Congressional staff member for one of the U.S. House of Representatives’ foremost leaders on health care policy, then shifting to the non-profit arena, working on an array of health-related issues, ranging from mental health parity and rare disease awareness to medical technology and the treatment of chronic disease.
The views or opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions or views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability(Imperatives). The eleventh principle states that “Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical trials. The importance of this research and its application and transfer to oncology care plans should be recognized and encouraged.”
Video Transcript:
So I think it’s well-recognized and certainly from the advocate community we’ve heard time and again that cancer doesn’t affect just a body part, it affects the whole person, and often not just the person but family members and communities. So, attending to that is very important and is an integral part of care. And we’ve seen that come out in multiple different ways, perhaps the most spectacular is the IOM report on “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”
I have to say I was in the privileged position of being the program officer on that particular contract to the IOM. So we were able to write in the request to the people who were going to come together and put that report together to say don’t tell us just the problems, tell us how we’re gonna answer that. And I think that volume does a great job of saying that it has to be part of comprehensive care, that we have to be evaluating people, so if you look at the framework it says we need to be evaluating people, if there’s a problem we need to be connecting them with referral resources, and to me the most critical part is that we follow back.
So if I see a patient and I say, “this patient is depressed and I’m going to refer the patient to a psychiatrist or for some therapy or I’m gonna make a drug prescription,” it’s not enough that I’ve done that. I need to do that, I need to ask, and I need to make the referral, but if I don’t follow back I haven’t done my job. And that, in some ways, is the little piece that we struggle most with in a clinical setting is the follow back. Did it work? Or did I send you to someone, you didn’t go, or you went and you hated the person, or they gave you a prescription but you didn’t fill it, or you filled it and had side effects and stopped using it or threw the pills out, or felt that you were dismissed in some way. I have to follow back. That’s really critical.
So psychosocial care, I think, we know has to be part of the standard of care. We struggled a little in the clinical setting with that because I think physicians have been overwhelmed with managing treatment. But as we’ve gotten better at managing treatment I think we realize how important the psychosocial and behavioral components are, and we’re seeing that embraced more often in the clinical setting.
To do that, I think, you have to walk on all sides. You have to talk to patients and families about it, you have to talk to clinicians, you have to work with systems so that there’s a way to pull up that information right away, evaluate somebody’s status with it, and communicate among all the players what’s gonna be done about this. So there are lots of places where we need to be building systems and having conversations about how to really deliver on what we know is appropriate care. When I think of the research portfolio, what’s fascinating to me is the field of cancer survivorship was originally built on psychosocial studies, not medical outcomes. So a slight twist in that is our pediatric survivorship studies actually first looked at medical outcomes and they’re now coming back and looking at employment, relationships, social functioning. Whereas in the adult arena, a lot of the work was on coping, and psychological adaptation and not so much on fatigue, or pain, or chemobrain that we’re seeing now. So we’re seeing this sort of complementary shift in peds and adult, in part on the adult side is because people are living longer and we need to be addressing not just the medical sequelae, but the psychosocial hand in hand.
And I think in the adult world, the legacy was actually, we used to think about helping people die with their disease, so the focus on coping and emotional well-being was very big when we thought of survivors because we’re gonna help them die of their disease and not live with it. But once we started saying, “oh wait a minute, they’re gonna live with it,” then we had to shift gears and say, “Okay, so your emotional is gonna be driven by the fact that you have these pain syndromes and that your intimate life is ruined by this and we need to address that if we’re going to help you cope with this illness.” So we’ve seen that now come back and be better integrated in the care of adults because we expect them to be there. And we expect survivors to talk about it and bring it up and that’s not easy.
We have all this technology and it’s wonderful, but if you’re feeling really sick, it’s hard for you to use that and exercise that option. You do need to have advocates advocating for you, loved ones who come to the clinic to say, “Well, you know Jessie’s really been fatigued lately,” or “John has really been yelling at the kids lately,” so that you have resources to help you get the care that you need. So it has to be a dialogue, we have to be engaging all of the parties. And it’s moving. I think we’re seeing that science move forward.
About the guest: Julia Rowland, PhD is the Director of the Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), at the National Cancer Institute (NCI). Since she assumed the position of full-time Director of the OCS in 1999, Dr. Rowland has sought to champion the visibility of and investment in cancer survivorship research both within the Institute and across other federal and non-governmental agencies, and to raise public awareness about the health and quality-of-life needs of the growing population of cancer survivors and their families.
The views or opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions or views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The tenth principle states that “The provision of psychosocial services must be safeguarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of care to determine availability of needed support and their ability to seek information and to advocate on their own behalf.”
Post by Diane Blum, LMSW
Twenty years later, the 10th principle of the NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), is as critical and significant as it was in 1995. When it was written, it followed years of psychosocial research that demonstrated that cancer created an emotional crisis for patients and families. It followed a decade of increased patient choice in treatment, a shift to outpatient care with greater responsibility on the patient, and the rise of patient advocacy groups that brought attention to the diverse needs of people with cancer. CancerCare, an organization founded in 1944 to provide emotional support and financial assistance to anyone with cancer where I worked for two decades, had been addressing psychosocial needs for half a century at the time Imperatives was written. Nonetheless, twenty years ago, there were few structures built into the delivery of cancer treatment that helped identify psychosocial needs, much less address them systematically.
It is gratifying to write that in 2015, these needs have regularly been recognized and addressed. For example, the Institute of Medicine (IOM) has issued several relevant reports, including the 2007 landmark report, Cancer Care for the Whole Patient. The Commission on Cancer now mandates that cancer centers have screening programs for psychosocial distress. Most recently, the new Oncology Care Model for Medicare beneficiaries assesses the percentage of patients who receive psychosocial screening and intervention at least once during a defined episode of care.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2008 IOM Report)
The positive news is that providing psychosocial services as called for in the 10th Principle has been “institutionalized” and recognized as an evidence-based need. Unfortunately the country has a significant shortage of mental-health providers, and there are insufficient resources to meet these needs. CancerCare and other support organizations in the oncology community fill crucial gaps by providing a wide range of counseling, education, and referral services, especially for the large majority of patients treated in settings without access to affordable psychosocial care. To extend these services, patient-centric support organizations need to work with one another and with oncology leaders to increase the number of community-based psychosocial practitioners and to develop more systematic and efficient links with medical care providers. Strategies to strengthen tools to identify patient needs as well as mechanisms to refer survivors to appropriate resources can be a goal for support organizations and health care teams to achieve collaboratively.
Patient advocacy groups and oncology thought leaders must maintain the energy that led to the NCCS Imperatives and the subsequent changes in practice. Now that we recognize and accept psychosocial needs as part of comprehensive cancer care, we must move forward to continue to develop systems that relieve patients and families of their psychosocial burdens.
About the author: Diane Blum, LMSW is senior vice president for Social Services at the National Executive Service Corps (NESC). She was executive director of CancerCare for 20 years until 2009 and CEO of the Lymphoma Research Foundation from 2009-2013. Ms. Blum served on the Board of Directors of NCCS for seven years and was editor in chief of Cancer.Net until 2013.
The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives). The tenth principle states that “The provision of psychosocial services must be safeguarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of care to determine availability of needed support and their ability to seek information and to advocate on their own behalf.”
Post by Elizabeth J. Clark, PhD, ACSW, MPH
In the past twenty years, many advances have been made in ensuring quality cancer care for persons living with cancer. Individuals now have better treatments, more options, more cures, and longer periods when they are cancer-free or in remission. Enhanced insurance coverage, especially the passage of the Affordable Care Act, has contributed to innovative programming in survivorship and supportive care.
So what is still missing and what is left to do? Disparities and remnants of the dual delivery system in cancer care remain. Patients with resources can get second and third opinions, can travel to major cancer centers for the most advanced therapies, can afford exorbitant co-pays, and can secure the help and services needed. Those with limited means do not have as many options. Additionally, as cancer treatments have become more complex, health literacy has taken on heightened prominence. This further contributes to disparities in care.
All of these factors point toward an increased need for self-advocacy and advocacy on behalf of loved ones with cancer. Cancer survivors have long contended that it is through self-advocacy and personal empowerment that other identified needs (for information, intervention, and support) are met. Yet just as a digital divide exists between generations and educational levels, there also exists a divide between persons who are expert, or at least adequate, at self-advocacy, and those who are unable to direct or to be a full partner in their own care.
As health care professionals, we must support and include self-advocacy training as part of patient-centered care. This will help cancer survivors acquire the advocacy skills they need to find relevant information, to make better decisions, to communicate well with care providers, and to negotiate with employers and insurers across the care continuum. In short, we need to make certain that survivors can stand up for their rights so that they can live as fully and as well as possible after a cancer diagnosis.
For those cancer survivors who are unable to be self-advocates, we need to provide added assistance from patient navigators, oncology social workers, case managers, and care coordinators—the members of the care team most adept at providing psychosocial and supportive services and removing barriers to optimal quality of life. While we have seen progress in areas like distress screening, patient-centered care, and palliation of symptoms, they have not yet become a routine and required part of cancer care in all settings.
Looking back over the 20-year period since the Imperatives for Quality Cancer Care was published, it is apparent that progress in psychosocial and supportive care has been made. This progress needs to be safeguarded and promoted, but more is needed. We remain hopeful that initiatives like multidisciplinary teams, medical homes, and standards for patient-centered care will finally result in optimal and comprehensive care that every cancer survivor deserves.
About the Author: Elizabeth (Betsy) Clark is the President of the Start Smart Career Center. She is the former CEO of the National Association of Social Workers. Betsy is a past-president of NCCS and an author of the Cancer Survival Toolbox series on self-advocacy. She currently is Vice-Chair of the Leukemia and Lymphoma Society and serves on the Executive Committees of C-Change and the National Hospice and Palliative Care Organization.
The views and opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions and views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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The tenth principle states that “The provision of psychosocial services must be safeguarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of care to determine availability of needed support and their ability to seek information and to advocate on their own behalf.”
Twenty years ago, authors of the Imperatives warned that “psychosocial care may be seen as an adjunct, ‘value-added’ rather than an essential.” Advocates then called for increased funding of research on the psychosocial effects of a cancer diagnosis and on how the cancer care system can help survivors and families address common symptoms like anxiety, depression, and elevated stress.
Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2008 IOM Report)
In recent years, psychosocial oncology has gained traction as a critical component of quality cancer care. In 2008, a highly influential Institute of Medicine (IOM) report described psychosocial concerns as a cause of additional suffering with the potential to weaken adherence to prescribed treatments and as a direct threat to survivors’ return to health. This spawned initiatives aimed at ensuring that patients’ care is comprehensive: treating the entire person and not just the disease. The report asserts that survivors should expect to have satisfying communication with doctors, nurses, and others treating their cancer. This includes conversations about needs for emotional and social support at critical junctures of one’s care in addition to resources to help manage the disease and treatments, as well as one’s overall health.
Fundamental to meeting the needs of the whole person is discussing emotions that may exacerbate stress. The NCCS Know Yourself Worksheet lets patients identify their hopes, desired milestones and goals, concerns about quality of life and side effects, and more in order to arm survivors with prepared questions to discuss with their care team during a doctor visit. Other organizations like CancerCare offer counseling and other supportive services. Survivors and their caregivers can call 800-813-HOPE (4673) to talk about their worries, fears, frustrations, or any other concerns they may have.
Read more posts from our “20 Years Later” series and join the conversation by sharing and leaving comments.
There are other signs of progress. For example, the National Cancer Institute (NCI) has a number of resources to address psychosocial needs of people with cancer and their loved ones, including the expansive “Coping with Cancer” section. The NCI-Funded Research Portfolio (NFRP) (which provides estimates for how much money NCI spends each fiscal year in different areas of research such as lung cancer and leukemia) includes in the menu of research topics categories such as “behavioral and social science,” “depression,” and “cancer survivorship.” Thanks to the NFRP database, we can see how much funding goes to research on the psychosocial effects of a cancer diagnosis, as advocates called for twenty years ago. A search for “psychosocial” on the NCI website leads to more than a thousand results. Many cancer centers provide psychosocial support that is specific to the cancer diagnosis. Today the need for psychosocial support around a cancer diagnosis is widely accepted.
As psychosocial oncology continues to develop and to make a name for itself in the cancer world, patients should know that their emotional and social needs are just as critical to their health as their medical needs to treat the cancer. This month, Diane Blum will discuss progress in the field of psychosocial oncology, and Betsy Clark, PhD will address the tenth principle from her perspective as a social worker and patient advocate. We look forward to your participating in the conversation!
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), this month we will look at the ninth principle of Imperatives: “The responsibility for appropriate long-term medical care must be shared by cancer survivors, their families, their oncology team, and primary care providers.”
Guest Post by Patricia A. Ganz, M.D, founding member of the National Coalition for Cancer Survivorship
Twenty years later, the 9th Principle of the NCCS Imperatives for Quality Cancer Carecould not be more relevant. Increasingly, patients are required to take more responsibility for their health, using knowledge and self-monitoring tools that have become an essential part of medical care, such as monitoring of blood pressure, physical activity, and weight-—to name a few easily measured parameters. As with many chronic conditions such as asthma, diabetes, and some forms of cardiac disease, cancer patients must play an active role during and after their treatment, into survivorship and beyond. While their oncology care providers need to chart the course of treatment, preferably with a care plan that has had active input by the patient and their family. However, it is the patient who will be most well-informed about the side effects of treatment, and the physical and psychosocial sequelae that result from the cancer and its treatments. Increasingly, cancer survivors can track their own health, medical conditions, and symptoms over time using electronic tools and journals; they can provide valuable input to the health care team in this process.
Identifying and organizing the post-treatment medical care team for cancer survivors has become increasingly complex in the past two decades since the NCCS Imperatives for Quality Cancer Care were developed. The cancer care team usually includes multiple clinicians, and there may be additional medical subspecialists who become involved in management of the long-term or late effects of cancer treatment (e.g., cardiologists, pulmonologists, gastroenterologists). Many cancer survivors do not have access to a specific health care provider who they can turn to for non-cancer medical concerns, and even when they have had a long term relationship with one, that clinician may feel uncomfortable continuing to manage non-cancer issues in the setting of a complicated cancer treatment history.
During the past decade, there has been increasing awareness of this gap in coordination of post-treatment care for cancer survivors. With the 2006 Institute of Medicine (IOM) report on adult cancer survivors1 calling attention to the needs of the growing numbers of cancer survivors, and the more recent 2013 IOM report on delivering high quality cancer care,2 as well as changes associated with the implementation of the Affordable Care Act and other federal interventions (e.g., implementation of electronic health records, patient-centered medical homes), the medical community is much more focused on care planning, coordination of care, communication, team based care, and measuring quality. We are in the midst of a major transformation of the health care system, and there is some hope that this will benefit cancer survivors, by bringing them into less fragmented systems of care, with a uniform medical record, and more comprehensive assessment of their needs without duplication of efforts. However, this is still a work in progress.
In the meantime, what can cancer patients and their families do to ensure the best coordination of care as they move forward in the post-treatment period? First, if possible, they should obtain a treatment summary and care plan from their treating oncologist that can be maintained for future reference, as we know that medical records can be destroyed (e.g. Katrina) and this can serve as a vehicle to promote communication between the oncologist and the patient’s primary care clinician. There are many tools to facilitate this. I have been part of the Journey Forward collaboration, and we have developed an app for patients to use called “My Care Plan” that can help get things started. As part of that discussion with the oncologist, the patient and their family should ask how frequently they need to be seen by an oncology specialist for follow-up and which member of the oncology team should be the primary point person. If appropriate, specific follow-up tests and procedures could be taken over by the primary care provider, especially if the oncology provider is not easily accessible (e.g., distance to travel, limited time to see patients in follow-up).
Sharing of medical test results is a lot easier today than in the past, and the main focus should be on sharing of information and regular communication between the oncologist and the primary care clinician. Primary care providers are increasingly familiar with the long-term management and follow-up of many types of adult cancers, and thus the cancer survivor should try to engage their primary care provider in assuming some of this responsibility if possible. Many routine issues, such as management of blood pressure, weight management, depressive symptoms, bone health, and pain are often areas in which primary care providers have substantial competence. The care plan provided by the oncologist is necessary to fill in any gaps that are unique or unusual in relationship to the patient’s cancer experience, as well as to ensure that any specialized tests are performed. This is also something that is much easier to accomplish if the survivor is no longer taking cancer directed therapy.
The key for everyone involved is to openly discuss these issues. Cancer survivors seldom want to be discharged from the care of their treating oncologist, and primary care providers may have anxiety about missing a symptom of recurrence. Open discussion of how well each member of the professional team can support the cancer survivor in the post-treatment period is essential and the new frontier in coordination of cancer care. With the aging of the population and the continued growth in the number of cancer survivors,2 with rare exception, cancer survivors will no longer be accommodated for long-term follow-up in oncology clinics—there are just too many new patients who will need to be seen!
About the Author: Patricia A. Ganz, M.D., a medical oncologist, is a member of the faculty of the UCLA Schools of Medicine Public Health, where she is Distinguished Professor of Medicine and Health Policy & Management and an American Cancer Society Clinical Research Professor. She is the Director of the Center for Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center, where she also leads the Patients and Survivors Program. Dr. Ganz was elected to the Institute of Medicine in 2007, and received the American Cancer Society Medal of Honor in 2010. She served on the National Cancer Institute Board of Scientific Advisors from 2002-2007 and on the American Society of Clinical Oncology (ASCO) Board of Directors from 2003-2006. Her major areas of research include cancer survivorship and late effects of cancer treatment, patient reported outcomes in cancer clinical trials, and quality of care for cancer patients.
The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
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This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), this month we will look at the ninth principle of Imperatives: “The responsibility for appropriate long-term medical care must be shared by cancer survivors, their families, their oncology team, and primary care providers.”
Post by Larissa Nekhlyudov, MD, MPH, Associate Professor, Harvard Medical School
Over the past twenty years, the number of cancer survivors has grown substantially. Survivors are also living longer, getting older, and have numerous medical conditions that require attention. While survivors typically receive general medical care in primary care settings, the role of primary care providers (PCPs) in the long-term follow up of survivorship needs is now being emphasized. This focus was highlighted by the 2005 Institute of Medicine (IOM) report which—in addition to echoing many of the points outlined in the Imperatives—found that survivors are often “lost in transition” and do not get quality comprehensive care.
The past twenty years have produced important research findings supporting PCPs’ role in caring for cancer survivors. When survivors see PCPs, they are more likely to get preventive care and follow-up for non-cancer-related medical conditions. During treatment, PCPs are more likely than oncologists to manage chronic pain, to address psychosocial concerns, and to refer appropriately patient to hospice. When seen by both oncology specialists and PCPs, survivors get more comprehensive care, though they are at risk of having care that is redundant and uncoordinated and potentially more time-consuming and costly. Research suggests that PCPs would like to care for survivors but lack the knowledge and confidence in their skills to monitor for recurrences and late effects of treatment. Survivors value the general medical care they receive from PCPs but also question their understanding of cancer-related needs.
In order to overcome the challenges of transitioning from oncology to primary care, enhance the quality of information about long-term follow-up, and streamline care coordination, the IOM and others have advocated for the use of survivorship care plans. Such documents, ideally arising from a survivorship care planning “process,” summarize the treatment received and outline a tailored follow up plan. This document is akin to a hospital discharge summary that helps transition patients from inpatient to outpatient care. Unfortunately, the implementation of survivorship care plans has lagged since being proposed a decade ago, though with the upcoming mandate, should become a new standard in oncology care in the years to come. Further, there has been a growing effort to develop survivorship guidelines and educational programs for both PCPs and oncologists. Such guidelines, educational programs, and survivorship care plans will no doubt provide PCPs with much needed (and desired) guidance on how best to approach caring for long-term survivors.
Read more posts from our “20 Years Later” series and join the conversation by sharing and leaving comments.
During these twenty years, there has been tremendous progress in cancer survivorship research and clinical care, with a growing awareness of the important role PCPs play. Yet there are still challenges to overcome. Cancer survivorship begins with diagnosis and treatment, and we have to address how to integrate PCPs and optimize their role during this critical time. We need to identify those survivors who may fully transition to PCPs after treatment and prepare them for the process. For others who may need intermittent or ongoing oncology care, we should develop clear paths of communication and use information technology to help coordinate care. Despite competing demands, it is essential that medical school, residency training, and continuing medical education curricula incorporate topics in cancer survivorship. Working together with our oncology colleagues, patients, and their families, we will continue to improve the quality of care along the cancer continuum. Here’s to the next decade!
About the Author: Dr. Nekhlyudov is an Associate Professor in the Department of Population Medicine at Harvard Medical School and a general internist at the Brigham & Women’s Hospital in Boston, MA. She is particularly interested in improving the care of cancer survivors and the interplay between primary and oncology care. Over the past decade, she has been at the forefront of the notable progress made in the area of cancer survivorship, including the development of survivorship care policies, clinical guidelines and educational programs. Dr. Nekhlyudov founded www.cancerpcp.org, a cancer survivorship resource for primary care providers.
The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship.
Read our blog and comment policies here.
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As part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (Imperatives), this month we will look at the ninth principle of Imperatives: “The responsibility for appropriate long-term medical care must be shared by cancer survivors, their families, their oncology team, and primary care providers.”
Over the last twenty years, much progress has been made in the way we prevent, detect, treat, and monitor cancer, and survival rates have noticeably improved. However, most survivors still struggle with late and long-term effects from initial treatment and often do not know where to go for help. The ninth principle of the Imperatives calls on families, oncology providers, and primary care providers to help relieve these burdens from the survivor.
When treating cancer survivors, providers need to consider the risks and benefits of treatments, the probabilities of cancer recurrence and second cancers, the benefits of prevention and lifestyle change, the need for effective surveillance of and interventions for late effects, the need to address psychosocial concerns, and the complexities of integrating survivorship concerns with care for any other conditions. The implementation of these aims is still in progress, but more and more medical professionals are becoming aware of survivorship issues and how to address them.
Organizations like NCCS are advocating for policies that make implementation of this care planning a reality. The survivorship care plan (treatment summary and long-term care plan) is a tool that will help survivors, caregivers, and physicians understand the treatment history and appropriate steps to take in the future. A survivorship care plan greatly improves care coordination by calling for input from oncologists to be used by a patient’s primary care physician and other healthcare providers post-cancer in order to monitor and to manage late and long-term effects.
Primary care teams can play a key role in survivors’ receiving the appropriate long-term medical care by following the survivorship care plan developed by the oncology-care team. Survivorship care plans allow oncologists to share with primary-care clinicians medical information and any concerns in a manner that is comprehensive and meaningful to survivors.
Patients and families can together help manage their care plan. In fact, they can be key to promoting care coordination and communication among oncologists and non-cancer specialists who may not be familiar with a survivorship care plan. Families can be a huge help in obtaining medical information for care plans, facilitating conversations, asking questions, and helping manage varying levels of logistic toxicity.
Care-team establishment in cancer survivorship is complex. As our healthcare system continues to transform and to improve, patients, families, oncologists and primary care providers must play an active role in managing health concerns once survivors have moved beyond active treatment. Organizations like NCCS continue to advocate for policies that honor the principles laid out twenty years ago, including care planning and coordination, in our ever changing healthcare system. This month we will hear from Dr. Patricia A. Ganz and Dr. Larissa Nekhlyudov on progress towards the ninth principle of the Imperatives and work that still remains. NCCS is dedicated to ensuring continued progress as policy becomes action. Join us in the conversation!
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The eighth principle in the Imperatives for Quality Cancer Care states, “Systematic long-term follow-up should generate data that contribute to improvements in cancer therapies and decreases in morbidity.” In this post, Dr. Melissa Hudson of St. Jude Children’s Hospital describes the multitude of ways in which the Childhood Cancer Survivor Study’s decades of medical data has helped connect the dots between primary childhood cancers and the late effects of associated treatments.
Guest Post By Melissa M. Hudson, MD Director, Cancer Survivorship Division, Dept. of Oncology, St. Jude Children’s Research Hospital
Progress in survival for childhood malignancies is tempered by the sequelae of the cancer and its treatment. Compelling evidence supports that childhood cancer survivors are a highly vulnerable group with a substantial risk of adverse health-related and quality-of-life outcomes resulting from their curative cancer therapy, broadly called “late effects”. Observational studies of survivor health outcomes represent a critical first step to characterizing those at high risk for late effects who may benefit from interventions to prevent or reduce the risk of treatment-related health problems. This research involves investigations evaluating how the risk of a specific late effect is influenced by the primary cancer and its treatment, as well as by personal factors such as age, sex and race, and underlying genetic predisposition and health-related behaviors.
The Childhood Cancer Survivor Study (CCSS), a multi-institutional, multi-disciplinary collaborative NCI-funded research resource, was established in 1994 to systematically evaluate long-term outcomes among childhood cancer patients who survived five or more years from diagnosis. The CCSS cohort, which now includes more than 24,000 survivor participants diagnosed between 1970 and 1999, has been the source of some of the most significant publications addressing long-term mortality, morbidity and quality of life of childhood cancer survivors.
Seminal findings from this cohort include:
Documentation of the magnitude and severity of chronic health conditions experienced by survivors in the first three decades following treatment;[1][2]
Demonstration of increasing and excess late mortality attributed to subsequent neoplasms, cardiac, and pulmonary causes among exposed childhood cancer patients,[3] especially among survivors of Hodgkin lymphoma;[4]
Delineation of dose-risk models for radiation-associated breast cancer,[5][6] CNS tumors,[7] and thyroid cancer;[8]
Identification of increased risk of late-occurring and recurrent stroke among long-term survivors exposed to CNS radiation;[9][10]
Documentation of the impact of modifiable cardiovascular risk factors like hypertension on the incidence and severity of major cardiac events;[2]
Characterization of sociodemographic factors, cancer treatments and health behaviors predisposing to impairment in physical and psychological health status among aging childhood cancer survivors;[11]
Evaluation of the impact of cancer treatment on neurocognitive functioning, emotional health and distress and health-related quality of life;[12][13]
Identification of sub-optimal participation in screening and surveillance practices for subsequent neoplasms[14][15] and health-protective behaviors like physical activity.[16][17]
Findings from these studies have been essential in developing safer therapies for newly diagnosed patients, counseling patients and families about potential health risks, and guiding the development of health screening recommendations and health-preserving interventions both during and after completion of cancer therapy. As such, the CCSS resource has played a pivotal role in informing the care of children with cancer across the survivorship spectrum. Ongoing research in the cohort aims to characterize risk profiles for survivors from more modern eras (1987-1999) and integrate molecular biology-based approaches to refine to expand risk definitions for targeted survivorship outcomes that will enhance identification of high-risk populations who may benefit from measures to prevent and re-mediate cancer treatment toxicity.
About the Author Melissa M. Hudson, MD is currently a Member and Director of the Cancer Survivorship Division in the Department of Oncology at St. Jude Children’s Research Hospital. She directs the After Completion of Therapy Clinic, which now monitors over 5,000 long-term childhood cancer survivors treated on St. Jude trials. Dr. Hudson serves as Co-Chair of the Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancer and Co-Chair of the International Late Effects of Childhood Cancer Guideline Harmonization Group. She is also the Chair of the Childhood Cancer Survivor Study Education Committee.
The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship.
Read our blog and comment policies here.
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“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”
—Karen M. Saunders
President, Northeast Regional Cancer Institute
