Although there are now 10 million cancer survivors in the United States, 1 only recently has attention been paid to their unique needs and the management of their care. Both the cancer itself and its treatment can affect long-term health and quality of life in people who have survived the acute phase of cancer care. To examine the state of the science of nursing research and care for cancer survivors, about 50 nurses and other stakeholders gathered in Philadelphia from July 15 to 17, 2005, for an invitational symposium. Many of the attendees were themselves cancer survivors, and their input as both providers and recipients of cancer care ensured that the needs of survivors would be addressed from both vantage points.
On Friday afternoon and most of Saturday, symposium attendees heard from presenters whose articles appear in this publication. On Saturday afternoon, the attendees divided into five groups to identify gaps in research and to suggest priorities for a nursing research agenda surrounding survivorship issues. When they reconvened on Sunday morning, attendees again met in small groups to identify barriers to optimal management of cancer survivors’ health care and to devise strategies to address these barriers. The group then gathered in a plenary session to share the work of the breakout groups. The results are summarized in tables in the executive summary of this publication and discussed in this article.
The symposium, called Nursing Approaches to Managing Late and Long-Term Sequelae of Cancer and Cancer Treatment, was a joint project of AJN, the American Cancer Society (ACS), the National Coalition for Cancer Survivorship, and the University of Pennsylvania School of Nursing. Funding for the conference came from the Agency for Healthcare Research and Quality (AHRQ grant # 1 R13 HS 16072-01), ACS, the Lance Armstrong Foundation, and several pharmaceutical companies (Sanofi-Aventis, Amgen, Novartis, Endo, MGI Pharma, and Ortho Biotech Products). The project leaders were Pamela J. Haylock, MA, RN, and Carol P. Curtiss, MSN, RN.
In both the prepared presentations and the informal discussions, several points were made repeatedly. Often, these recurring themes reflected the differences between acute care of cancer patients and long-term care of cancer survivors.
Definition of cancer survivor.
The group agreed that there was no consensus on what is meant by “long-term cancer survivor.” It was observed that some define survivorship as beginning with the diagnosis of cancer, while others define it as five years postdiagnosis. Some participants argued that many of the problems survivors face arise once the initial cancer treatment and follow-up by the oncology team has ended and the individual is referred to the community provider for primary care. It was also noted that even studies that have examined long-term-survivor issues have rarely studied those surviving 20 years or more, despite the fact that 14% of cancer survivors are living more than 20 years after diagnosis. For purposes of this paper, long-term cancer survivor will refer to those who have completed initial cancer treatment.
Care in the community setting.
Attendees repeatedly remarked that most cancer survivors are cared for in the community setting, not in major cancer centers. Many health care providers in community settings (as well as in university and comprehensive cancer settings) focus on follow-up for cancer recurrence but not on late effects of cancer or its treatment. Primary care physicians and nurses in community settings may not be fully informed about the care the survivor received or about current cancer treatment, its sequelae, or what parameters should be monitored. Survivors are seldom informed about long-term effects, so they may not report relevant symptoms to their primary care providers. Conversely, because cancer survivors are likely to be followed by their primary care providers after the initial cancer treatment, nurses and other providers in cancer centers may be inexperienced with and unaware of long-term sequelae that don’t present as recurrence or new cancers. There is little evidence about how best to prevent, monitor, and manage these late effects and health consequences regardless of who is providing the health care.
Attendees recognized the need for a paradigm shift in the concept of cancer care from an acute care to a chronic illness model. In the acute phase, emphasis is on treatment and cure. In the follow-up period, cancer is more like a chronic condition. People may be free of disease, or they may have chronic difficulties associated with it or its treatment. Attendees took this a step further, reiterating the need for a wellness viewpoint. As one nurse survivor said, “It’s not enough to still be alive. It’s important to be living well.”
Need for a comprehensive survivors’ database.
Most cancer registries and databases do not track survivors for 10, 20, or more years after diagnosis. What is known about cancer survivors often comes from small studies, often involving single institutions or survivors of a particular cancer. A comprehensive database is needed to develop a broader picture of cancer survivorship.
Lack of guidelines.
There is an absence of evidence-based guidelines for monitoring and managing the problems of adult survivors of cancer. Providers lack direction; as a result, care is sporadic and fragmented. Until information accumulates to develop evidence-based guidelines, consensus guidelines could provide direction for care of survivors. Participants pointed to guidelines developed for survivors of childhood cancer as one model.
What’s causing the symptoms?
Information from a database might also help sort the causes of the symptoms. Survivors and providers alike are often unsure whether new symptoms signal a recurrence of cancer, are adverse effects of treatment, or reflect a comorbidity. This issue is particularly problematic for older cancer survivors, because it may be difficult to distinguish among normal changes from aging, noncancer comorbidities, recurrence of cancer, or late or long-term sequelae of the disease or its treatment.
Disparities and the need for cultural sensitivity.
Access to appropriate care is not equal across all U.S. populations. In poorer areas, the five-year survival rate for all cancers combined is 10% lower than that in more affluent areas, suggesting variation by socioeconomic status and ethnicity. 2 Members of different ethnic groups may have different attitudes toward cancer care and follow-up. Another issue is whether all populations have access to the best treatments at the earliest stages. Providers need to be sensitive to these potential differences and address disparities at all levels, from the bedside to the policy table.
GAPS IN THE RESEARCH
During the conference, attendees worked in small groups to identify gaps in research. Then each group presented its selection of the top three to five high-priority areas for future research. Frances Marcus Lewis and Carrie Tompkins Stricker summarized the discussion. After the conference, the list was reformulated into research priorities that attendees had an opportunity to amend. The final suggested agenda for nursing research on cancer survivorship appears in the executive summary on page 10. In brief, participants called for research to answer the following questions:
- What are the long-term physical, psychosocial, spiritual, economic, quality-of-life, and family effects of surviving cancer?
- What interventions are effective in preventing and managing late and long-term effects of cancer and cancer treatment?
- What health care systems issues affect care for long-term cancer survivors?
- What are the education needs of providers, survivors, caregivers, and the community at large surrounding cancer survivorship?
The need to develop or improve existing databases was often mentioned in the discussion of research gaps. Specific toxicities and long-term sequelae, both by type of cancer and by specific treatment, need to be delineated. Symposium attendees also emphasized the need for large, longitudinal, prospective, population-based studies. Studies also are needed to determine the cost of follow-up care and compare it against the cost of no surveillance or follow-up care.
BARRIERS TO OPTIMAL CARE FOR CANCER SURVIVORS
On Sunday morning, working in small groups, the participants focused on what they determined to be the three to five most significant barriers preventing cancer survivors from receiving high-quality care. For each barrier, they then selected the three strategies with the greatest potential to remedy the situation. Each of the five small groups then presented their work to the entire group.
The groups frequently identified similar barriers, which they organized into three broad categories: knowledge deficits, health system values and structure, and financial issues. The groups often came up with similar strategies to address these barriers, but they also identified some unique solutions to improve care of cancer survivors.
Each of the five work groups identified insufficient awareness and knowledge about cancer survivorship as a barrier to care. The knowledge deficits are widespread, affecting health care providers, the survivors, and the general public. Denial and minimization contribute to the lack of knowledge. While some providers don’t want to acknowledge that treatment may have caused new problems or may believe that patients shouldn’t complain because they are still alive, survivors may not want to consider the possibility of recurrence or other problems related to a disease they thought was behind them.
To increase awareness of cancer survivorship issues, the groups called for a broadly based media blitz. For the general public, this means articles in high-circulation magazines (such as AARP The Magazine, People, and Reader’s Digest), as well as public service announcements and appearances by celebrity spokespeople who are themselves cancer survivors. Culturally sensitive community-based education programs also will increase knowledge about cancer survivorship among the general public. For health care professionals, more articles about survivorship are needed in oncology and primary care journals for nurses, physicians, and other providers.
Curriculum redesign is also essential to educate clinicians on the needs of cancer survivors. Symposium attendees recommended including information about cancer survivors at all points of professional education: in medical and nursing school curricula, in clinical rotations, and in accreditation and certification programs offered by professional organizations such as the American Association of Colleges of Nursing and the Oncology Nursing Society. Because care of survivors often takes place outside the large cancer centers and acute care settings, the curricula of community health, ambulatory care, and advanced practice nurses need to be assessed carefully. Conferences and multidisciplinary meetings will increase knowledge about cancer survivors’ needs among the providers who care for them. As with work being done on end-of-life care using “train the trainer” workshops and online bibliographies, clinicians who cannot attend meetings at distant locations will learn about cancer survivors.
When beginning treatment for a malignancy, patients often are not informed of possible long-term effects of cancer and its treatment—or, if they are informed, they’re unlikely later to recall hearing this information. The focus during this stage is on treating the disease. An unintended result is that many survivors do not know about early symptoms of adverse events or about possible new problems and may not be alert to them or be aware that they should tell their providers about them. During the follow-up period providers, hampered by their own knowledge deficits, do not realize that they should ask about particular symptoms or problems. To address this barrier to optimal care of cancer survivors, symposium attendees recommended developing with every cancer patient a record of specific treatments received, laboratory reports, and preventive and health promotion measures for review during treatment appointments. Variously called a treatment plan, treatment discharge summary, and wellness plan, this record would provide both cancer survivors and their teams information essential in the follow-up period and long after diagnosis.
A creative recommendation to address survivors’ knowledge deficits is the development of mobile units, similar to mammography vans, with resources for cancer survivors. Survivors also can serve as educational resources to the community. One group of symposium attendees suggested using the HIV-prevention model or the breast cancer advocacy model as a guide.
Health care system barriers.
Other barriers to optimal care of cancer survivors can be grouped under the broad rubric of health care system obstacles. Some of these barriers reflect values of the health care system, and others are practice issues.
One group referred to the tendency to place too little value on outcomes other than cure or survival. Another mentioned societal attitudes. Yet another group identified a major barrier in the way that the health care system is structured to solve problems rather than to provide holistic care. In recommending strategies to overcome these barriers, groups often cited approaches that were also cited as ways to address knowledge deficits: educate health care providers, make the public aware of survivorship potential, and give a treatment summary to survivors that includes lifestyle considerations and addresses health promotion strategies.
Symposium attendees emphasized the need for a paradigm shift, from an illness orientation to a wellness approach. Not limited to cancer survivors, the wellness approach should be part of the entire health care system, so that wellness is one aspect of the treatment plan from the time of diagnosis.
Participants also identified practice issues as health care system barriers. These barriers relate to the health care care system’s focus on acute rather than long-term care. They also involve the misconception that all cancer care, including long-term follow-up, occurs in large cancer centers rather than in the community setting when, in fact, 80% of cancer care is delivered in the community. To address these barriers, the group recommended development of creative, community-based, multidisciplinary practice models, incorporating survivorship issues from the time of diagnosis. Attendees suggested the development of screening tools for cancer survivors and the broad dissemination of these tools among health care providers. They recommended looking at new roles for nurses, such as collaboration with lay providers or community health workers, and suggested use of a navigator system for patients with cancer and for long-term survivors, which would provide personal health care guides to help access care.
Another system barrier identified was lack of research to inform practice. One way to address this barrier is to urge that clinical studies include a long-term survivor component. Multisite consortiums should be established for survivor research and development of a database. Symposium participants suggested using existing data and research programs as a starting point. For example, survivorship issues could be explored in national population-based cancer surveillance systems, namely, the National Program of Cancer Registries of the Centers for Disease Control and Prevention and the Surveillance, Epidemiology, and End Results database of the National Cancer Institute. Looking beyond cancer studies per se, symposium attendees suggested evaluating existing national surveys (for example, the National Health Interview Survey) for cancer survivorship content as well as including survivors in existing longitudinal studies such as the Nurses Health Study. An advantage of this last example is that nurses’ recollection of their medical history, including drugs and dosages they received for cancer treatment, is likely to be quite accurate. Whatever research is done must be culturally sensitive and involve ethnically diverse populations.
Repeatedly, the absence of evidence-based clinical guidelines to guide practice was mentioned as a health care system barrier. In the absence of data to use in developing evidence-based guidelines, symposium attendees called for the development of consensus guidelines for survivor care. The guidelines should direct practitioners in monitoring for toxicity and other long-term sequelae, emphasize wellness in a holistic approach to survivorship, and consider the effect of cancer on the family of the survivor.
Financial issues are barriers to survivors’ care in two ways. Who pays for the care of cancer survivors? And who funds research on survivorship?
To ensure coverage for long-term follow-up and surveillance of cancer survivors, one group suggested that Medicare coverage be instituted as soon as a diagnosis of cancer is established; but some attendees felt that relying on the “broken” Medicare system was not the answer. Other suggestions were directed at educating insurance providers, for example, by hosting a conference for key payers. Referencing the previously mentioned need for clinical practice guidelines, symposium attendees cited the importance of informing payers that the lack of guidelines results in both undertesting and overtesting of cancer survivors.
Another strategy to encourage funding for survivor care is to conduct clinical trials on the price of long-term follow-up, which participants dubbed “phase IV trials.” Symposium attendees anticipated that such care would be found to be less expensive in the long run than the absence of regular follow-up of cancer survivors. Nurses can provide much of the long-term care, and studies are needed to prove that this can be a cost-effective approach. Thus, symposium attendees called for demonstration projects on cancer survivorship clinics managed by nurse practitioners.
With so little known about survivorship, much research is needed. Multiple sources of funding, including new public–private partnerships, must be identified and evaluated for survivorship research opportunities. Survivors can be mobilized to lobby and advocate for increased public and private funding for research.
Advances in treatment have done much to increase the ranks of survivors. Now is the time to be sure that they are not just alive but also living well. The differences between acute management of the disease and long-term follow-up call for a new way of thinking, with emphasis on a wellness approach. Nurses can take the lead in moving this approach forward, both in research and in practice.
An initial step in improving the care of cancer survivors is to raise awareness and provide information in the health care community, among cancer survivors, and in the general public. As individuals make the transition from cancer patient to cancer survivor, they need to be informed about long-term effects so they can be active partners in their own long-term care.
Data must be collected to develop a comprehensive understanding of the issues and needs of cancer survivors. Until enough data accumulate to form evidence-based guidelines, development of consensus guidelines will help direct care of cancer survivors.
Turf battles must be set aside. Cancer survivorship is not the domain of any one health care discipline or practice setting. It is everyone’s concern.
© 2006 Lippincott Williams & Wilkins, Inc.
1. American Cancer Society. Cancer facts and figures 2005
. Atlanta, GA: The Society; 2005.