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Article first published online: 4 SEP 2009
Published 2009 American Cancer Society
Supplement: Cancer Survivorship Research: Mapping the New Challenges Atlanta, Georgia, Supplement to Cancer
Volume 115, Issue Supplement 18, pages 4265–4269, 15 September 2009
How to Cite
Pollack, L. A., Rowland, J. H., Crammer, C. and Stefanek, M. (2009), Introduction: Charting the landscape of cancer survivors' health-related outcomes and care. Cancer, 115: 4265–4269. doi: 10.1002/cncr.24579
The publication of this supplement was cosponsored by the National Cancer Institute's Office of Cancer Survivorship, the Division of Cancer Prevention and Control of the Centers for Disease Control and Prevention, and the American Cancer Society's Behavioral Research Center.
The opinions or views expressed in this supplement are those of the authors and do not necessarily reflect the opinions or recommendations of the publisher, the editors, the American Cancer Society, the Centers for Disease Control and Prevention, or the National Cancer Institute.
This article is US Government work and, as such, is in the public domain in the United States of America.
- Issue published online: 4 SEP 2009
- Article first published online: 4 SEP 2009
- Manuscript Accepted: 30 MAR 2009
- Manuscript Received: 4 FEB 2009
- Cooperative Agreement from the Centers for Disease Control and Prevention with the American Cancer Society as well as funds from the National Cancer Institute's Office of Cancer Survivorship
The field of cancer survivorship is characterized by a complex and rapidly evolving landscape. This supplement presents a series of data-driven articles selected to highlight the breadth of new knowledge in this area of the cancer control continuum that were presented at the Fourth Biennial Cancer Survivorship Research Conference in Atlanta, Georgia, June 2008. Included in the volume is research on the biobehavioral impact of cancer; studies on quality-of-life and economic outcomes; and work focused on caregivers, understudied populations, and healthcare providers. Cancer 2009;115(18 suppl):4265–9. Published 2009 by the American Cancer Society.
The field of cancer survivorship research is making remarkable progress in identifying, understanding, and addressing the effects that the experience of cancer and its treatment may have on the physical, psychological, social, and behavioral well being of cancer survivors and their caregivers.1 Just as advances related to cancer biology, diagnosis, and treatment continually evolve, so also do the amount and quality of research related to cancer survivorship. The rapid expansion of new knowledge focused on understanding and promoting the health of adults and children affected by cancer is enabling us to better chart and, at the same time, change the landscape of cancer survivorship.2
In June 2008, the Fourth Biennial Cancer Survivorship Research Conference, jointly sponsored by the National Cancer Institute's Office of Cancer Survivorship, the American Cancer Society's Behavioral Research Center, and the Lance Armstrong Foundation, brought together in Atlanta, Georgia, investigators and clinicians involved in cutting-edge cancer survivorship research. Nearly 500 researchers, clinicians, cancer survivors, advocates, policymakers, and public health experts were presented with the latest research focusing on the unique physical, psychosocial, behavioral, and economic outcomes associated with cancer survivorship. The goals of the conference were 2-fold. The first goal was to take a forward-looking approach to critical questions and key topics of concern for those living with a history of cancer as well as their caregivers and healthcare providers. The second goal was to highlight the information, programs, and care needed to address these outcomes.
This supplement offers a collection of data-driven articles that represent the diversity of themes presented at this conference. Each of the articles explores a specific aspect of the cancer survivorship experience. Building on the 2 previous supplements published after the First and Third Biennial Meetings,3, 4 the current volume offers perspectives on some of the latest findings related to the long-term effects of cancer on survivors, issues confronted by their caregivers and partners, and the related challenges faced by healthcare providers in managing these outcomes. Reflected in these articles are research designs that encompass a complex array of methodologic approaches to examining cancer survivorship, including population-based surveys, randomized controlled trials, and quantitative as well as qualitative study designs.
Two articles examine historically understudied groups of survivors. Work by Soler-Vila et al focused on cancer-related beliefs among African-American and white colorectal cancer survivors.5 The African Americans in their study were less likely than whites to believe that regular checkups could lead to diagnosing asymptomatic cancer. Another compelling finding was that, despite adjustment for cancer stage and sociodemographic variables, survivors who believed cancer cannot be cured had an increased risk of all-cause mortality. This article invites further research to elucidate the interplay between clinical and psychological factors in overall survival and provides evidence of the potential survival benefits of promoting optimism in survivors.
Surprisingly, older adult survivors remain an understudied group, although >70% of those living with a history of cancer in the United States are aged ≥60 years.6 In their prospective cohort study of elderly women with and without cancer, Lazovich et al observed that, although the mental health of older survivors was comparable to that of unaffected peers, cancer took a toll on physical and functional well being above and beyond that accounted for by aging or other comorbid illness.7 One provocative finding in their research was that longer term survivors (≥10 years postdiagnosis) had worse emotional well being than women without a cancer history or those closer to their illness experience.
Included in this supplement is an article describing the outcomes among what is beginning to be viewed as 1 of the “new” survivor populations, namely, individuals living long-term with advanced disease. Many patients with metastatic disease may not refer to or even view themselves as “survivors,” although some in the advocacy community and at the National Cancer Institute would define them as such,8 the availability of life-extending therapies makes understanding the experience of these individuals increasingly important in planning and delivering cancer care. In their exploration of this new territory, Rose and colleagues discovered that survivors of advanced disease exhibited different trajectories with respect to their psychospiritual well being, depending in part on age and level of education.9 Their findings point to the need to find ways to identify early those who may be at risk for greater psychospiritual problems in living long-term with their illness and to provide targeted support or therapeutic interventions.
Living with a chronic illness is not just a challenge for long-term cancer survivors: It also affects family members and others close to the survivor. A major topic examined at the Biennial Meeting was the impact of illness on caregivers and partners of cancer survivors, sometimes referred to as “secondary survivors.” In their study of the effects of protective buffering, Langer and colleagues illustrate the complex nature of the patient-caregiver relationship in which each member may seek to shield the other from the trauma of the illness, at times to the emotional detriment of both.10 In another study, Porter and colleagues present data on an intervention study designed to promote patient-partner communication about and adaptation to cancer. They describe how formal training on emotional disclosure about their cancer increased feelings of intimacy between gastrointestinal cancer survivors and their partners compared with couples in an educational control group.11 One caveat, however, was that, despite improved feelings of intimacy, the communication intervention did not decrease the level of psychological distress for either the patient or the partner.
Although appreciation for the demands of cancer caregiving is growing, efforts at designing tools to systematically identify families at risk for problems in coping with cancer are only just beginning to appear. One of the more sophisticated of these is being developed and tested by a team at Children's Hospital of Philadelphia (CHOP).12 Under the leadership of Anne Kazak, a long-time childhood cancer researcher, the CHOP group is developing the Psychosocial Assessment Tool, a brief screening instrument designed to identify families at risk for adaptation problems. This instrument specifically holds promise for improving pediatric survivor psychosocial outcomes.
Another set of challenges in navigating the terrain of cancer survivorship are the effects not only on the psychosocial well being of families but also on their economic health. Changes in the healthcare system, such as the shift of care to outpatient settings, have resulted in an increased need for family involvement in care. Limited research, however, has attempted to measure the economic cost of providing informal cancer care so that it can be included in calculations of the financial burden of cancer. In a set of innovative studies attempting to calculate these costs, researchers examined cancer's impact on the labor earnings of spouses and the time (and its financial cost) of caring for a loved one with cancer. In 1 study, Syse et al combined 4 of Norway's comprehensive, population-based data sources to determine that women's earnings were decreased at 2 years, 5 years, and 8 years after diagnosis, regardless of whether they or their spouse had cancer.13 In contrast, the earnings of men were not affected by their spouse's cancer. These findings suggest that the stress on women related to their traditional caregiving role may be compounded by financial concerns. In another study using data from the American Cancer Society's Quality of Life Survey for Caregivers, Yabroff and Kim investigated the effect of cancer type and stage on the time costs of informal cancer caregiving, which they calculated using hours of caregiving provided.14 Not surprisingly, the 2 most costly cancers in terms of caregiving time are those typically diagnosed at a later stage and with lower length of survival: lung cancer and ovarian cancer.
The last group of articles in this issue examined the healthy behaviors and health-related care being delivered to cancer survivors. With respect to childhood cancer survivors, research has demonstrated that many of these individuals, as they mature into adults, fail to realize that, as a result of their original cancer treatment, they are at increased risk for second malignancies. This is illustrated well in an analysis of the Childhood Cancer Survivor Study by Buchanan and colleagues. This investigative team, led by Ann Mertens, observed that participants in their large cohort sample, in particular those exposed to radiation as part of their initial care, might benefit from educational efforts to reduce levels of sunbathing and tanning booth use and to increase sunscreen application as a means of lowering later skin cancer incidence.15 Stolley and colleagues in the Chicago Healthy Living Study examined health behaviors and body mass index of minority adult childhood cancer survivors compared with nonminority survivors and noncancer controls. This work promises to inform interventions that may serve to modify behaviors related to cancer risk.16 Recognizing that complementary and alternative methods (CAM) often are used by survivors to cope with the effects of treatment, Stein and colleagues explored the use of CAM by colorectal cancer survivors who recently completed treatment. By using data from the American Cancer Society's Studies of Cancer Survivors, these researchers observed clear differences between women and men in the prevalence of CAM use and described psychosocial correlates of reported CAM use.17
Not unlike cancer survivors themselves, healthcare providers also can feel lost when trying to achieve optimal care in the years after cancer treatment. In a survey of internal medicine physicians, Bober et al observed that <25% of these primary care physicians routinely provided care that comprehensively addressed survivors' risk of recurrence and potential late effects, including mental and sexual health issues, related to having had cancer. The majority of these primary care physicians reported feeling unprepared to care for survivors because of a lack of formal training in this area and ill-defined or absent clinical practice guidelines.18 In an attempt to chart a course for the psychosocial care of cancer survivors, Paul Jacobsen writes of the need to develop such guidelines and identifies several barriers to this process.19 Two primary problems he points to are 1) the lack of a sufficient research base to formulate truly evidence-based guidelines in all areas, and 2) the absence of an entity comparable to the Children's Oncology Group (COG) that focuses on adult cancers. He suggests that, to surmount these barriers, a collaborative effort by several organizations may be needed, one that will use the approach taken by COG, which relies on a combination of evidence-based and consensus-based guidelines to promote recommended standards for the care of survivors of adult cancer.
We are beginning to understand the landscape of cancer survivorship better as our knowledge expands through the work and dedication of these and other investigators. Looking ahead, it is imperative for research and practice communities to translate these and other new findings into evidence-based interventions, programs, and delivery systems that have the potential to improve the health and lives of cancer survivors and those who support them through treatment and the years that follow. The challenges to achieving this goal are many. They include the need for collaboration among clinical sites, community and public health organizations, and policymakers to ensure that research and care delivery are complementary and not duplicative. They also require that we work together to build on what we already know; foster the next generation of cancer survivorship researchers and clinicians; engage the voice and participation of survivors and their advocates in the work being pursued; and, vitally, find ways to measure and communicate with the public and providers the success of this work.
The Fourth Biennial Cancer Survivorship Research Conference with this resulting supplement can be viewed as a springboard for mapping out future directions for research, programs, and clinical care in this dynamic and fast-growing scientific area. It is hoped that interest in survivorship research will continue to thrive as we continue the journey forward as survivors, researchers, and organizations dedicated to enriching our understanding and approaches to living longer and better. Toward this end, planning for the Fifth Biennial Cancer Survivorship Research Conference: Delivering Science and Care, June 17–19, 2010, in Washington, DC is already underway. Cancer survivorship research must keep pace with the rapidly evolving nature of cancer treatments, so that our knowledge not only permits us to understand the experience of those diagnosed in the past but also informs our ability to care for today's survivors as well as those who will develop cancer in the future.
Conflict of Interest Disclosures
Supported by a Cooperative Agreement from the Centers for Disease Control and Prevention with the American Cancer Society as well as funds from the National Cancer Institute's Office of Cancer Survivorship.
- 3Cancer survivorship: resilience across the lifespan. Proceedings of the National Cancer Institute's and American Cancer Society's 2002 Cancer Survivorship Conference. June 2-4, 2002. Washington, DC, USA. Cancer. 2005; 104( 11 suppl ): 2543-26465., .
- 6Role of comorbidity, symptoms and age in the health of older survivors following treatment for cancer. Aging Health. 2007; 3: 625-635., .
- 8National Cancer Institute. Dictionary of Cancer Terms: Survivorship. Available at: http://www.cancer.gov/dictionary/. Accessed February 3, 2009.
- 15Behaviors associated with ultraviolet radiation exposure in a cohort of adult survivors of childhood and adolescent cancer. A report from the Childhood Cancer Survivor Study. Cancer. 2009; 115( 18 suppl ): 4374-4384., , , et al.
- 17The role of psychological functioning in the use of complementary and alternative methods among disease-free colorectal cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors. Cancer. 2009; 115( 18 suppl ): 4397-4408., , , .