Introduction: Partnering to embrace the future of cancer survivorship research and care


  • Julia H. Rowland PhD,

    Corresponding author
    1. Director, Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland
    • Office of Cancer Survivorship. 6116 Executive Blvd., Ste. 404, Bethesda, MD 20892
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  • Michael Stefanek PhD

    1. Vice President, Behavioral Research, Director, Behavioral Research Center, American Cancer Society, Atlanta, Georgia
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  • This is a US government work and, as such, is in the public domain. Published 2008 by the American Cancer Society.

  • This supplement was sponsored by the American Cancer Society's Behavioral Research Center and the National Cancer Institute's Office of Cancer Survivorship.


The growing population of individuals living long term following a cancer diagnosis has led to a rapid acceleration in the pace of survivorship research. Much is already known about some of the more persistent and late occurring effects of cancer and its treatment, but much still needs to be learned, in particular, how best to improve quality of life along with expanded length of survival. To ensure that survivors and their loved ones receive state-of-the-art care based on a solid research evidence base will require collaborative partnerships, such as that created between the American Cancer Society, National Cancer Institute, and Lance Armstrong Foundation in hosting our biennial conference.

In 2006 the National Cancer Institute's (NCI) Office of Cancer Survivorship (OCS), the American Cancer Society's Behavioral Research Center, and the Lance Armstrong Foundation, organizations serving as leaders in promoting the science of cancer survivorship research, sponsored the third biennial Cancer Survivorship Research Conference. The articles in this special supplement to Cancer represent data and summaries from selected talks given at this historic meeting, an event that also marked the 10th anniversary of the establishment of the OCS at the NCI. Collectively, this set of articles outlines some of the key directions for future research and for understanding and delivering follow-up care to survivors and their family members after treatment ends, and addresses the implications of this science for larger efforts to reduce the burden of cancer on the nation.

The past several years have witnessed an unprecedented level of attention devoted to the topic of cancer survivorship. This is reflected in the publication of special journal issues addressing the topic,1–3 the appearance of new textbooks to educate healthcare professionals about the needs and care of survivors posttreatment for cancer,4, 5 and even a new scientific journal devoted to this burgeoning area of science.6 Since 2003, 5 major reports have appeared that review the state of the science with respect to the long-term and late effects experienced by those living for years with a history of cancer. These documents provide specific recommendations regarding the next steps for researchers and clinicians working with and caring for this population, as well as for funders, payors, and policy makers, to ensure that efforts will continue to help us improve not just the quantity of life for those diagnosed with cancer, but also their health-related quality of life. Included in this series are 2 volumes produced by the Institute of Medicine, Childhood Cancer Survivorship: Improving Care and Quality of Life,7 which appeared August 2003, and From Cancer Patient to Cancer Survivor: Lost in Transition,8 released November 2005, a report published April 2004 by the Centers for Disease Control and Prevention (CDC) and the Lance Armstrong Foundation, A National Action Plan for Cancer Survivorship to Advance Public Health Strategies,9 and 2 from the President's Cancer Panel, Living Beyond Cancer: Finding a New Balance,10 released June 2004 with recommendations for consideration, and a follow-up report delivered June 2006, Assessing Progress, Advancing Change.11 Survivors' stories, once a taboo topic in both public and private settings, are featured regularly in diverse news media across the nation. Along with the ubiquitous bright yellow ‘LiveStrong’ wrist bands promoted by Lance Armstrong, the extraordinary champion for and new ‘face’ of cancer survivors not only in the US but around the globe, this heightened visibility of cancer survivorship issues reminds us that cancer is an illness that touches each of our lives at some point in time. These signals make it clear that cancer medicine and care have officially moved beyond the earlier, more limited focus on cure, to one that embraces concern for the health and well-being of cancer survivors after treatment ends, however long that course of life may be.

It was in recognition of the growing number of survivors and their poorly understood needs that the Office of Cancer Survivorship was established at the NCI in 1996.12 Examination of the life and health as well as, although on a far more limited basis, ongoing care of those posttreatment for cancer was not a new phenomenon at that particular juncture in time.13–15 Indeed, the American Cancer Society (ACS) was an early leader in promoting workshops on topics germane to survivors' outcomes,16–19 and both the ACS and the NCI have a long history of funding work by investigators examining and attempting to address the needs of this population. However, the science associated with this part of the cancer control continuum remained limited. By creating a designated ‘home’ for survivorship research (see Table 1) within the larger NCI enterprise, formal recognition was given to the field, and an era of intense growth of research in this arena ensued. It also spurred efforts to create dynamic partnerships to champion this emerging field. One of the most vital and productive of these has been the collaboration between the OCS and the ACS's Behavioral Research Center to support and direct biennial cancer survivorship research conferences.

Table 1. Definition of Cancer Survivorship Research
Survivorship research seeks to:
  1. Source: National Cancer Institute's Office of Cancer Survivorship (

1. Identify, examine, prevent and control adverse cancer- and treatment-related outcomes (such as pain, neurocognitive problems, sexual dysfunction, second cancers, and poor quality of life).
2. Provide a knowledge base regarding optimal follow-up care and surveillance of cancer survivors.
3. Optimize health after cancer treatment (promote lifestyle/behaviors that will reduce both cancer and noncancer-related morbidity and mortality).

Launched in 2002, the biennial conferences are designed to highlight cutting-edge work being done by scientists in the survivorship area.20 They bring together key stakeholders for advancing and applying the findings of this work, including researchers in behavioral and biomedical science, healthcare professionals (both specialty and primary care practitioners), graduate students in health-related sciences, leaders of cancer services delivery programs, community-based advocates, state and local public health planners, as well as cancer survivors and their family members. These gatherings also serve as a means to support networking and collaboration among those invested in improving survivors' outcomes.

The third biennial conference, held October 4–6, 2006, in Washington, DC, and titled Cancer Survivorship Research: Embracing the Future, was special for several reasons. It marked the first time that the Lance Armstrong Foundation (LAF) served as a full partner in sponsoring these meetings. In 2004 the LAF supported the addition to the biennial conference of a highly regarded survivor/scientist mentoring program. This program, now a regular component of the biennial conference, paired 20 community-based advocates with researchers conducting survivorship studies. The objective of the program was, on the one hand, to help these advocates interpret the science behind the survivorship research presented, and on the other hand to understand how findings from this research might translate to improved care for those in the communities they represented and served. The conference highlighted several emerging areas of pursuit. Specifically, it examined: the impact of e-health and communications on survivors and their family members, evolving models of and the challenges to follow-up care for cancer survivors, the needs of cancer caregivers, and the state of research on and strategies to address health disparities in cancer survivorship.

The conference also served to mark the 10th anniversary of the OCS. As part of this celebration it featured an awards ceremony honoring Ms. Ellen Stovall, President and CEO of the National Coalition for Cancer Survivorship, and Dr. Anna Meadows for their key roles in helping create the OCS and serving as its first director, respectively. It is the selected articles from this important biennial meeting that comprise the content of this special supplement to Cancer for which we have the privilege of serving as editors.21 While this supplement does not claim to be exhaustive in the research covered relevant to cancer survivorship (eg, employment, spirituality, and other issues worthy of continuing research attention are not included), it captures much of the exciting work critical to the psychosocial issues of importance to cancer survivors.

The first 3 of these articles stem from the plenary sessions on Communications and eHealth and Family Caregiving. In the work by Hesse et al.22 it is clear that survivors display an ongoing need for cancer-related information, and this need may indeed shift over time away from being fulfilled by healthcare providers to being supplied, or at least supplemented, by the Internet. Their analysis of HINTS (Health Information National Trends Survey) data supports the need to ‘reengineer’ the information environment to better serve cancer survivors and their caregivers. It is interesting to note that the very advances that have led to improved survival for more cancer patients have, in turn, resulted in increased demands for effective and timely communication about the disease and its treatments between patients and providers. These advances include 1) more treatment options and the attendant need for growing emphasis on decision-making dialogues; 2) greater use of complex multimodal (eg, surgery, radiation, chemotherapy, hormonal therapy, biologic therapy) as well as multiagent regimens requiring careful explanation of their use; 3) broader application of longer-term adjuvant therapies that are taken for months or years after the end of definitive therapy, putting a premium on communication to ensure patient adherence; and 4) increased reliance on outpatient-based delivery of most of this care with its consonant expectation that patients (and their caregivers) will engage in more self-care or management. As these authors point out, appreciating these challenges, and understanding (and as possible matching for compatible) patient-physician communication strategies as well as patient information needs over time is critical for survivorship care. A key to achieving this goal is finding ways to leverage new communication technologies (eg, telephone, Internet, email, digital assistants) to keep up with the fast pace of change taking place in cancer care. The vital importance of these issues is reflected in the recently released NCI monograph on this topic, Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering.23

The articles by Manne and Badr24 and Kim and Given25 remind us that cancer caregivers, largely family members, are also considered as being encompassed under the broader definition of ‘cancer survivors’ advanced by the advocacy community.26 There is already compelling evidence that at times these ‘secondary’ survivors may be more distressed than patients themselves.27 Despite frequently being identified by patients as key to their health and functioning, caregivers are often neglected not just in research but even in the clinical care setting. Indeed, many lament that the HIPAA (Health Insurance Portability and Accountability Act) laws, designed to protect the privacy of patient records, have served inadvertently to create undesired barriers to sharing important clinical information with those in the best position to help ensure that optimal care is being received (and tolerated) by survivors, namely, their primary caregivers. A major exception to this general pattern of excluding or neglecting family members' roles is seen in the pediatric oncology setting where a provider would never (in part by law, but also by standard of practice) care for the child outside of the context of his or her family. Parents and siblings needs are routinely addressed in these settings, a model that those operating in the adult setting might wish to revisit.1 Manne and Badr's research demonstrates the close connection between the well-being of the survivor and that of the caregiver, illustrated in this case by the report of breast cancer survivors and their spouses on cancer's complicated impact on intimate relationships.24 To further complicate matters, we know that these relationship patterns may change over time, as illustrated by the work of Kim and Given.25 Both sets of researchers emphasize the need for clinicians to attend to the role of caregivers in survivors' care, and for researchers to broaden the current approach to providing supportive interventions to include or target caregivers as part of efforts to reduce suffering and promote long-term health. Data suggest that intervening with both parties holds the promise not only of improving survivors' health outcomes, but also those of their caregivers, many of whom themselves may already be—or become over time—cancer survivors.

Attention to long-term health outcomes among survivors—and their caregivers—is being driven by the finding that most individuals found to have cancer today can expect to live years after treatment; for those diagnosed as children, potentially decades.28 The remaining 5 articles in this supplement issue focus on topics specific to addressing long-term survivors and their care. Given the ‘graying’ of our society and the finding that cancer is a disease associated with aging, it is quickly becoming apparent that the interplay between the two, cancer and aging, portends a major public health challenge for the future.29 In an important article from among the dozen breakout sessions of the 2006 biennial conference, Blank and Bellizzi30 describe in detail some of the significant, and surprising, given their proportion of the prevalent population, gaps that exist in our understanding of the impact of cancer on our older survivors (those 65 years old or older). They describe the implications of current demographic trends for the composition or ‘face’ of tomorrow's survivors, along with the complex health and illness trajectories this diverse segment of society manifests. They go on to delineate several directions we will need to take if we are to understand, and appropriately care for and support, this rapidly expanding segment of our survivor population.

The contribution of cancer's chronic and late effects, both psychological and physical, to survivors' adaptation is thoughtfully reviewed by Stein et al.31 Clear from their summary of this body of work is that cure comes at a cost. Identifying what person, tumor, treatment, and environmental factors— alone, or more often in combination—lead to adverse outcomes, and using this information to test and deliver strategies to eliminate or mitigate these costs to individuals, families, and society, are arguably among the key clinical functions of cancer survivorship research.

Two promising directions in intervention research to promote posttreatment well-being have taken their lead from survivors themselves. Eager to regain control of their lives, bodies, and future health after cancer, many survivors report interest in and use of lifestyle changes and complementary medicine.32–37 In many cases, this is independent of a physician's recommendation. Among the most popular of these are physical activity interventions.38, 39 Because it does not involve taking more drugs, something many survivors are averse to doing after exposure to intensive treatments, and is something in which anyone can engage on some level, physical activity is an appealing focus of intervention. Furthermore, research already suggests that exercise can benefit quality of life and functioning,38–42 and at least 3 observational reports suggest it is associated with survival.43–45 However, as Irwin et al. describe,46 there are significant challenges to the conduct of clinical trials that might provide us with guidelines for the delivery, and with the rigorous evidence base needed to evaluate the long-term benefits, of physical activity interventions.

Monti et al.47 remind us that complementary (CAM) therapies also have appeal to survivors looking to enhance their recovery. Interest in CAM therapies has a longer history than that for physical activity interventions, as the former have been, and continue to be, actively used by many people in an attempt to prevent and treat cancer, not just survive or live with it. Monti et al. make a case for using this inherent interest in alternative medicine to engage patients and survivors—and optimally their healthcare providers—in more systematic efforts to take a ‘whole person,’ rather than a strictly biomedical, approach to managing disease and recovery.47

Among the many challenges to doing cancer survivorship research are getting access to target populations, retaining participants over time, securing funding to do the necessary work, and, importantly, being able to show that the work performed is making a difference. Researchers have been successful in demonstrating that a diverse range of interventions can improve quality of life, function, and adaptation among survivors48; they have had less success, however, in convincing insurers, or even medical care systems or practices, to adopt these programs as part of routine care. One argument for this failure is that most interventions lack data on their replicability; but more important, few provide data on the impact on cost outcomes.49 In the final article of this set, Geiger et al.50 describe a unique resource supported by the NCI that has the potential to change this picture: the Cancer Research Network (CRN). A consortium of 12 health maintenance organizations nationwide, the CRN was created to foster research on cancer prevention, early detection, treatment, long-term care, and surveillance with a special emphasis on the health economics associated with this care.51 Because it provides access to linked administrative data, studies conducted among members of the populations covered by these entities provide researchers with the opportunity to understand the impact on healthcare utilization and costs of providing different rehabilitative, supportive, and educational interventions to cancer survivors and their family members. As described by Geiger et al.,50 several of these studies are already under way or planned and, depending on the findings, may help bolster the case for insurers to underwrite the provision of selected psychosocial and behavioral interventions that promise to define the standards for and, ideally, reduce overall economic burden of quality cancer care delivery.

The increasing breadth and sophistication of studies presented at the biennial meetings make it clear that the field of cancer survivorship research, once limited in scope, is rapidly entering into its adolescence. Plans under way for the 2008 biennial call for broader attention to the interface between the biological and psychosocial aspects of survivors' adaptation. The 2008 conference will also address the need for development of strategies to translate research from bench to bedside and disseminate more widely interventions found to be effective in reducing negative sequelae and promoting health. An important take-home message across these articles—and as reflected in the biennial conference itself—is that key to achieving success in the ambitious goal of eliminating undue suffering and promoting optimal health-related quality of life for all cancer survivors is the development and maintenance of productive partnerships among those engaged in this work. Communication and coordination across federal agencies, nonprofit organizations, professional societies, community-based organizations, healthcare delivery systems, and payors are necessary to support survivorship research. Also needed are strong collaborations among researchers, clinicians, survivors, and their loved ones to advocate for use of this evidence base in their work and lives. It is not only survivors who are embracing the future, but also cancer clinicians and researchers who realize that they have a vital role to play in ensuring that the extended—and for some permanent—seasons of survival (as described by Mullan52) now afforded most newly diagnosed cancer patients are as long and healthy as possible.