In 2001 the National Cancer Institute's (NCI) Office of Cancer Survivorship and the American Cancer Society's (ACS) Behavioral Research Center forged a new partnership to champion the growing field of cancer survivorship research. As part of this partnership, the NCI and ACS made a commitment to co-sponsor biennial scientific conferences that would bring together investigators, clinicians, and advocates engaged in conducting or promoting research among individuals who had undergone treatment for cancer. The first of these meetings was held June 2–4, 2002, in Washington, DC. On Sunday, June 2nd, a date recognized as National Cancer Survivor's Day, a Town Hall meeting was held preceding the conference, which engaged more than 100 community participants. This activity, supported by the National Coalition for Cancer Survivorship and telecast on the ACS website, provided the “human face and voice” to the 2 days of scheduled scientific meetings that followed. This supplement to Cancer contains the expanded, peer-reviewed articles of most of the scientific talks given at this historic event.
Due to advances in early detection, treatment, and supportive care, the 5-year survival rate for adults diagnosed with cancer is now 64%. This figure is even higher for those diagnosed as children, 75% of whom can expect to be alive at 10 years.1 As of 2002 (the year for which the most current figures are available), it was estimated that there were more than 10 million survivors of cancer in the U.S. alone, and greater than 24 million survivors worldwide.2 As advances in cancer control diffuse into the community, the rate of those dying prematurely of heart disease continues to decline and, with the aging of the world's population, the number of individuals diagnosed with and surviving long-term with a history of cancer will continue to grow into the foreseeable future.
Early psychosocial and behavioral research among cancer survivors who had undergone treatment sought to document the diverse effects of the disease and its treatment on these survivors' lives and those of their families. These studies made it clear that being disease free did not mean being free of the disease. Cancer has the capacity to touch all aspects of an individual's health: physical, functional, psychological/cognitive, social, economic, and spiritual.3 In talking with and listening to the accounts of hundreds of cancer survivors, researchers also learned that despite experiencing catastrophic events at times, many cancer survivors manifest remarkable resilience in the face of illness. It was in recognition of this new focus in survivorship research that the NCI and ACS planning committee members chose “Resilience Across the Lifespan” as the theme for their first co-sponsored Biennial Cancer Survivorship Research Conference.
Historically, the majority of the published long-term cancer survivorship research focused on the outcomes of childhood cancer survivors because it is the pediatric oncology arena in which the most dramatic treatment success stories have occurred. Indeed, our pediatric cancer survivors represent the vanguard of the cancer survivorship movement; their experience also may be likened to that of the proverbial “canary in the mineshaft,” serving to alert the adult oncology community to the types of issues that will likely arise as survival among older cancer patients lengthens and they have the chance to develop or manifest some of the long-term and late effects of curative attempt. The overall goal for bringing experts in cancer survivorship together to examine resilience across the lifespan was to accelerate the pace of progress toward improving the health and quality of life of all cancer survivors and their families. The specific objectives of the conference were: 1) to develop a conceptual understanding of resilience as it applies to cancer survivorship across the lifespan; 2) to articulate the latest scientific information regarding factors that contribute to coping and resilience in cancer survivors and their families across the lifespan; 3) to examine the correlations among risk, resilience, and health outcomes; and 4) to identify interventions that foster optimal physical and psychosocial outcomes across the lifespan for cancer survivors and their families.
The first set of articles presented served to describe the broader landscape of current resilience and survivorship research and set the stage and context for the rest of the meeting. In the article based on their keynote talk, which formed the cornerstone of the conference, Aspinwall and Clark4 review the evidence related to the question of whether the experience of enhanced quality of life and other positive life changes that a number of people report in association with life-threatening events are real or actually beneficial. They conclude that people dealing with severe forms of adversity, such as cancer, usually experience both positive and negative emotions. Second, they assert that reports of positive emotions and beliefs expressed during the time people are dealing with life stress should not be interpreted as inappropriate or demonstrating that these individuals are failing to understand or deal with the negative features of their situations. They go on to note that not only is the evidence lacking that positive reactions are pathological, but rather there is reason to believe that people who experience early positive reactions may have fewer problems adapting to their crisis long term. With regard to the question of whether positive beliefs such as optimism lead people to tune out important negative information and therefore compromise their adjustment, Aspinwall and Clark suggest that such beliefs may actually help people to deal more effectively with the emotional costs of negative information.4 A third assumption that these researchers examine is that positive beliefs and emotions may lead people to see things as being more favorable than they really are and therefore may lead them to make poorer decisions. The data indicate that positive beliefs may actually help people focus on dealing with problems that are within their control and recognize that some problems are beyond their abilities or resources. Finally, Aspinwall and Clark deal with the assumption that some researchers and clinicians have that, although positive beliefs and emotions are pleasant, they have few lasting effects and therefore are unimportant or irrelevant. The authors conclude that, by contrast, positive beliefs may help people gain coping skills, knowledge, and social resources that provide enduring advantages in dealing with serious illness and other stressors.4 Although this review makes the case that that there are reasons to take positive changes seriously in attempting to develop an understanding of adaptational processes in cancer survivorship and resilience, more research is needed concerning how these positive beliefs and emotions develop and how they relate to characteristics of individuals, stressors, and resource environments.
The subsequent 5 articles in this introductory section of the conference sought to describe the resources available with which to understand survivorship outcomes for children and adults treated for cancer, and the special challenges associated with cancer survivorship among the elderly (as per Yates, whose article is not included herein but whose work in this area is described elsewhere),5, 6 those from ethnoculturally diverse backgrounds, and the family members touched by cancer, considered by some as “secondary survivors.” Robison et al. describe their experience with the NCI-funded Childhood Cancer Survivors Study (CCSS), a multisite, longitudinal cohort study involving more than 14,000 pediatric cancer survivors originally diagnosed between 1970 and 1986.7 The CCSS, developed and supported by a multidisciplinary team of investigators, offers a unique model and resource for monitoring the cost of cure among our youngest survivors. A large number of studies have documented the health and quality of life outcomes for diverse survivors up to 2 years after treatment, when follow-up care and surveillance remains intense. However, less is known regarding what happens to cancer survivors after they leave acute care by cancer specialists, when their ongoing treatment is assumed by community health care professionals. The CCSS collaboration demonstrates the value of following a large cohort of survivors as a means of learning about both the incidence and prevalence of the long-term (chronic) and late effects of diverse types of cancer and cancer treatments, and identifying other significant host as well as environmental and behavioral variables that have the potential to adversely affect long-term health outcomes. These types of studies help us to better understand what makes a difference over time in terms of varied outcomes and provide a sense of the causative relations among important variables. Robison et al. also point out the advantages of such research in identifying which patients should receive which type of interventions to reduce the adverse effects of cancer and promote health.
In an effort to create a similar descriptive data resource, the ACS's Behavioral Research Center established a program of research intended to identify the major psychosocial variables that affect the quality of life of adult cancer survivors. The American Cancer Society is supporting both longitudinal and cross-sectional studies of thousands of patients across the U.S. who were diagnosed with one of a number of common types of cancer. Using state cancer registries, population-based patient samples were selected to receive quality-of-life questionnaires. In their article, Baker et al.8 present some of the early results of this effort using pilot data from the longitudinal study of cancer survivors. They describe the problems encountered by adult cancer survivors approximately 1 year after the cancer diagnosis. Stage of life at the time of diagnosis was found to make a difference, with younger cancer survivors reporting more problems. Demographic variables also distinguished between survivors experiencing problems, with those who were female, nonwhite, unmarried, and poor reporting more problems.
In attempting to understand cancer's impact, and ultimately to design and provide interventions that will help cancer survivors cope with cancer and its treatment, it is important to consider not only the patient's developmental age or life stage and individual differences in personality, but also cultural differences variables that may affect how people utilize internal and external resources and whether they participate, and benefit from cancer survivorship interventions. Guidry et al.9 review the challenges inherent in this task and offer a number of strategies designed to bridge what they term the “divide” between cancer survivorship initiatives and minority participation. These include an emphasis on efforts to include indigenous population members in the design, development, and dissemination of survivorship research targeting their communities; reduce the barriers to research participation among these populations (e.g., by providing transportation, child care, translators, and tailored education regarding the value and purpose of research); provide cultural sensitivity training to diverse oncology healthcare providers and researchers; foster partnerships between researchers and other entities providing cancer treatment and services to minority racial and ethnic populations; and develop capacity-building skills to enable minority communities to benefit fully from advances in survivorship research and care.
In the last article in this group, Rolland10 reminds us that it is increasingly recognized that cancer “is a family disease.” It affects not only the person diagnosed, but also loved ones, as well as friends and coworkers. As a part of cost containment strategies, patients are sent home from the hospital sooner than in the past and with more caregiving needs that must be assumed by the family. The need to help one of its members deal with the acute as well as chronic phases of an illness such as cancer can have profoundly disruptive effects on the functioning and emotional balance of the family. In this age of greater knowledge regarding the genetic determinants of illness, the diagnosis of cancer in a member also may pose a threat to the patient's blood relatives and further add to the stress produced by this potentially life-threatening illness. Understanding how cancer affects the survivor's family is important in efforts to develop a more comprehensive approach to cancer, both in terms of guiding psychosocial oncology research as well as improving clinical practice. Rolland discusses the challenges that cancer presents for families and offers a richly illustrated and dynamic Family Systems-Illness Model that he asserts can offer a psychosocial map with which to address these challenges and make the inevitable strains more easily managed.10
In the next set of four articles, the authors explore the efficacy of interventions delivered at different points in the cancer trajectory to improve survivors' coping and health. A provocative 1989 study by Spiegel et al.11 suggested that participation by women with metastatic breast cancer in a weekly support group not only promotes psychologic adaptation, but also might prolong the lives of the participants. Goodwin provides a review of the randomized trials of group therapy interventions, including her own replication study of the intervention established by Spiegel et al.12 Goodwin failed to find convincing evidence that these interventions improved survival. However, she goes on to state that such interventions, in part related to the unique source and type of social support they offer, provide important psychological benefits, in particular for patients who are more distressed. This article reminds us that improving the quality of life of cancer survivors is still an important goal of interventions. Goodwin's work also highlights the need—and presaged the current call for—more rigorous design, analysis, and reporting of future efforts in this area.13
Given that some people may be naturally more resilient than others in dealing with life's stressors, the question arises whether there are ways to foster resilience and help people deal more effectively with adversity. Carver approaches this issue from the perspective of a personality psychologist who has been conducting studies for nearly 15 years on the normative patterns of adaptation to early-stage breast cancer.14 He views people as essentially goal-oriented and sees those who have been diagnosed with cancer—and undergoing treatment—as experiencing interruptions in the pursuit of the goals that give meaning to their lives; this in turn affects their quality of life. His work acknowledges that individuals differ in how they attempt to cope with cancer and deal with its attendant emotional burden. Carver and his colleagues have not only tried to describe the psychosocial processes that cancer survivors use in an attempt to cope with breast cancer, they also have been experimenting with interventions based on a cognitive-behavioral stress management approach to promote adaptation. They find that individual differences in personality play a significant role in affecting people's reactions to adversity and also are important in determining who benefits from such interventions. As this research group has moved on to study longer-term breast cancer survivors, like Aspinwall and Clark4 and other researchers, they have discovered that optimism plays an important role in predicting long-term emotional well-being, and that those patients who report distress in the short term are more likely to report greater distress in the long term.
After cancer therapy is over, issues arise regarding the reintegration of the cancer survivor into a more normal life, a period that Mullan described as the “re-entry” phase or the “process of resuming life as an active adult.”15 Stanton et al. point out that although this has been an understudied phase to date, the limited data documenting this transition generally agree that survivors are often ill-prepared for the problems they face when treatment ends, as they try to resume their lives.16 Their article reviews the problems in living that adult cancer patients describe approximately 1 year after diagnosis and details diverse strategies for addressing this, including one model being tested in an ongoing NCI-supported randomized clinical trial to promote posttreatment adaptation and recovery among breast cancer survivors.17
Although some cancer survivors, after successfully weathering treatment, believe they have “dodged a bullet” and therefore are at a reduced risk of further malignancy, quite the opposite is true. Most clinicians are aware that it is important for survivors to continue to be monitored for disease recurrence across their lifetime. However, data are beginning to demonstrate that it may be equally important for survivors to alter behaviors that have the potential to increase their risk of further cancer and diverse comorbid conditions. Pinto and Trunzo review the literature regarding four key health behaviors of cancer survivors that pose an additional risk to wellness outcomes: smoking, the use of alcohol, reduced physical activity, and poor diet.18 Research describing and attempting to change risky health behaviors of cancer survivors is a new and fast-growing area of investigation and intervention. Given the relatively slower pace of advances in oncology treatment innovation, developing and disseminating effective strategies to support survivors' adoption of healthy behaviors may result in more rapid improvements in survivors' quality of life than waiting for less toxic therapies. They also may play a role in prolonging survival. However, to realize this promise, we will need more studies that test rigorous, theory-driven intervention designs; consider multiple health behaviors together; target or include diverse samples in terms of ethnicity, geography, and types of cancer; and leverage new technology to implement the intervention and track behavior change and health.
Perhaps the most long-standing challenge to cancer survivorship research and care, made more pressing in this era of shrinking healthcare resources, is identifying which patients need and will benefit the most from psychosocial and behavioral interventions. The research presented in this supplement makes it clear that not all cancer survivors need psychosocial interventions. Holland and Reznik describe research being done by the National Comprehensive Cancer Network (NCCN) to develop both a screening tool for assessing cancer-related distress and a set of standards for the delivery of psychosocial care in clinical practice.19 They single out three groups of survivors who vary in their risk of distress: 1) survivors who have physical sequelae such as chronic fatigue, infertility, lymphedema, etc.; 2) those without physical sequelae, but who have psychiatric/psychological sequelae interfering with their daily functioning and quality of life; and 3) survivors who have no physical or diagnosable psychiatric disorders but who have trouble returning to normal lives and have a diminished sense of purpose or direction, manifesting what the authors call “subsyndromal symptoms.” They posit that the cancer survivors with the first two types of sequelae are at higher risk of distress. Research validating the reliability of the new NCCN screening tool in identifying those patients at risk for problems in adapting is already underway. Measuring the impact on survivors' ultimate health and functional outcomes as well as the cost of their care as a function of the use of this tool to triage patients to supportive services care represents a critical next step in evaluating the impact of these guidelines. Although not included in this supplement, the research by Kazak et al. regarding a way to identify families at risk for doing poorly (introduced at the 2002 conference) is developing apace of the NCCN guidelines and promises to provide a complementary assessment tool for evaluating and identifying for additional intervention the families of childhood cancer survivors.20, 21
In the final two articles in this supplement, the authors describe what it will take for us to translate the current survivorship science into practice and policy. One of the primary reasons for studying survivorship issues—the complex physical, functional, social, emotional, and economic impact of the many diseases we call cancer—is to use the results of this research to evaluate current and inform future efforts to improve the effectiveness of cancer treatments in curing or controlling cancer, while minimizing its human and social costs. In her article, Hudson notes the growing concern that the physical and personal price of cure in childhood cancer may be higher than expected.22 Because they have been the “vanguard” in our growing population of survivors, pediatric cancer survivors have been the focus of the majority of the studies seeking to understand the long-term and late consequences of cancer. Hudson observes that as children and adolescents age and transition away from care delivered by pediatric oncology specialists to that provided by community medical care providers, problems can arise. Many of these young survivors become lost to follow-up, making it difficult to track or communicate with them about their cancer-related treatment outcomes. In addition, they and their community healthcare providers may be unaware of cancer-related conditions that may warrant different approaches to a survivor's surveillance, treatment, and care. Discontinuity of care is equally a problem for adult cancer survivors, many of whose primary care providers may be unfamiliar with cancer-related health conditions or future risks. Hudson advocates for a multidimensional comprehensive approach to follow-up studies of cancer survivors that will generate data that can be used to guide the development of curative therapy. She stresses the importance of including in this approach consideration of host-related, cancer-related, genetic, and lifestyle factors, based on focused medical and behavioral evaluations of patients who participate in long-term follow-up programs.22 In a similar vein, Kattlove and Winn have proposed a comprehensive program for the follow-up care of adult cancer survivors that emphasizes the need to look beyond merely surveillance for a cancer recurrence to include: genetic testing and counseling as warranted; assessment and treatment of complications of therapy, including physiologic alterations and psychological problems; and review and assistance with health-promoting behaviors.23
Finally, bringing us full circle from the moving Town Hall meeting in which our conference began, we come to the compelling testimony of Ellen Stovall, President and Chief Executive Officer of the National Coalition for Cancer Survivorship and a 30-year cancer survivor.24 Her voice as a cancer survivor, advocate, advisor, and friend reminded the scientific community that ultimately, this research is about people. She urged us to be cognizant that we cannot solve the problems we do not understand, and therefore must continue to pursue and support research concerning survivorship issues.
Since the June 2002 conference, the NCI and ACS have held their second biennial cancer survivorship research conference in Washington, DC between June 14–16, 2004. Building on the first, the theme for this second conference was “Pathways to Health after Cancer.” With additional support from the Centers for Disease Control and Prevention, a preconference meeting concerning the potential for and challenges to disseminating survivorship interventions was added. In addition, with an educational grant from the Lance Armstrong Foundation, a survivor/scientist mentoring program also was featured. The third biennial conference will be held again in Washington, DC in the fall of 2006.
In the past 3 years, cancer survivorship has matured rapidly both as a field of research and as a focus of national attention. A witness to the latter is the appearance of three important reports addressing different aspects of survivorship: the report released in 2003 by the Institute of Medicine on “Childhood Cancer Survivorship: Improving Care and Quality of Life” (the adult survivorship companion volume for which will be released in November of 2005); the President's Cancer Panel report on “Living Beyond Cancer: Finding a New Balance,” released in 2004; and the Lance Armstrong Foundation and Centers for Disease Control and Prevention report, “A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies,” which also appeared in 2004.25–27 The combined recommendations in these reports promise to focus and accelerate the pace of survivorship research and practice. They also serve as a challenge to the many stakeholders involved in the health and care of cancer survivors, including federal, state, and local agencies; payors and providers; survivors and their caregivers; advocates; grass-roots organizations and service agencies; and policy makers to work together to ensure that we are delivering the benefits of our scientific investment to cancer survivors in all sectors of our diverse society.