1. Houldin, Arlene PhD, APRN, BC
  2. Curtiss, Carol P. MSN, RN-C
  3. Haylock, Pamela J. MA, RN

Article Content

For the full report of the symposium online, go to


More than 1 million cases of cancer are diagnosed each year. 1 This estimate does not include people with carcinoma in situ (noninvasive cancer) of any site except the bladder, and it does not include the more than 1 million basal cell and squamous cell carcinomas diagnosed each year. 1 The number of diagnosed cancer cases in the United States is expected to double by the year 2050 as the population ages and increases. 2 In the United States, cancer survivors total more than 10 million people. 3 With continued advances in strategies to detect cancer early and to treat it effectively, the number of people living years beyond a cancer diagnosis will continue to increase. 4 Regardless of disease status, any survivor may experience lasting adverse effects of treatment. 5


An invitational symposium, The State of the Science on Nursing Approaches to Managing Late and Long-Term Sequelae of Cancer and Cancer Treatment, took place in Philadelphia from July 15 to July 17, 2005. The goals were to develop research priorities and recommendations for clinical care, education, and policy related to nursing care for survivors of cancer who complete initial treatment during adulthood and continue to live with the potential or actual sequelae of their cancer, its treatment, or both. This executive summary reports the results of consensus building during and after the symposium.


Building on the growing number of recent reports that have identified needs and gaps in research on cancer survivorship, the project aimed to contribute to and extend this discussion. The symposium approached research, education, and practice from a broad nursing perspective. Attendees examined the current state of the science, identified gaps in knowledge and barriers to optimal care, and formulated action strategies.


The objectives of the symposium were to


* describe issues adult cancer survivors face, acknowledging cultural diversity, sexual differences, and disparities in access to care.


* critique the state of the science of nursing interventions for managing the late effects and long-term sequelae of cancer and its treatment.


* develop a comprehensive agenda for nursing on research, education, and practice issues related to cancer survivorship; address gaps in the science; and identify priorities for future research.


* identify the barriers in practice, education, research, and policy that hinder development and implementation of best practices to meet the needs of long-term survivors across a variety of health care delivery systems.


* develop a plan for engaging the broader nursing community in identifying appropriate roles and responsibilities among nursing specialties for promoting wellness among Americans with a history of cancer.


* identify and implement strategies for disseminating the analysis and recommendations to clinicians, nurse leaders, educators, researchers, specialty nursing organizations, other health care professionals, policymakers, industry representatives, consumer advocacy groups, and the general public.



The symposium 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 came from the Agency for Healthcare Research and Quality (AHRQ #1 R13 HS16072-01), the ACS, the Lance Armstrong Foundation, and several pharmaceutical companies (Sanofi-Aventis, Amgen, Novartis, Endo Pharmaceuticals, MGI Pharma, and Ortho Biotech Products).


We acknowledge the important work that many cancer organizations have done and continue to undertake in addressing the field of cancer survivorship. A list of published national initiatives appears in Table 1 (at right).

Table 1 - Click to enlarge in new windowTABLE 1. Published National Initiatives and Reports: Adult Survivors of Cancer


Over the past several years, interest in cancer survivorship has increased dramatically. Reasons include increased long-term survival for many types of cancer, as well as the public face of survivorship provided by seven-time Tour de France winner Lance Armstrong. 6


Although beneficial and often lifesaving, most therapies for cancer are associated with a spectrum of late complications that have the potential to compromise the quality of survivors' lives. 4 Research conducted with cancer survivors indicates that long-term adverse outcomes are more prevalent, serious, and persistent than expected. But the late effects of cancer and its treatment in survivors diagnosed as adults remain poorly documented. 4


Yabroff and colleagues estimated the burden of illness in more than 1,800 survivors of cancer compared with matched controls in a national, population-based sample. 5 The results indicated that survivors of cancer have significantly poorer health outcomes on many burden-of-illness measures than do people without a history of cancer. These health decrements may occur or continue many years after diagnosis.


"Comorbid conditions are the major threat to life for many cancer survivors, yet little is known about the quality of the non-cancer-related care they receive," stated Earle and Neville, who analyzed Medicare claims of over 14,000 survivors who had lived more than five years after diagnosis and treatment of colorectal cancer. 7 Compared with matched controls without a cancer history, the cancer survivors were more likely not to receive recommended care for a broad range of chronic medical conditions, such as angina, congestive heart failure, and diabetes. Moreover, African American, poor, and elderly people, whether or not they were survivors of cancer, were less likely to receive necessary care. The investigators concluded that survivors are a vulnerable population because their history of cancer may shift attention away from important health problems unrelated to cancer. Furthermore, the relative roles of primary care providers and specialists in the care of cancer survivors are not clear.


Quality-of-life issues in long-term survivors of cancer differ from the problems they face at the time of diagnosis and treatment. 8, 9 Many are at risk for and develop physiologic and psychosocial late and long-term effects of cancer and cancer treatment, such as cardiomyopathy, lung disease, chronic pain, anxiety, and sexual problems. Interventions with the potential to treat or ameliorate these late effects must be developed and evaluated for efficacy, and information about them disseminated. 4


In recent years, researchers have learned a great deal about child, adolescent, and adult survivors of childhood cancers. Less is known about long-term physiologic and psychological effects in survivors who had cancer as adults. Other gaps in survivorship research include effects in elderly cancer survivors and in minority and underrepresented populations; multicultural issues facing long-term survivors; and long-term effects in survivor populations that have been understudied to date, such as those who have had colorectal, gynecologic, and head and neck cancers. Some of the major challenges include the lack of evidence-based guidelines; the need for a national database for tracking the health of cancer survivors and for identifying their needs; and inadequate education of providers, the public, and policymakers. 10-13



The planning group for the symposium brought together clinical nursing experts and leaders on cancer survivorship in practice, education, policy, and research. Representatives from specialty nursing groups, other health care organizations, industry, consumers, and regulatory sectors also participated in the three-day nursing symposium.


The planning committee identified nursing researchers and other experts in the long-term sequelae of cancer and cancer treatment that have been studied less than other sequelae. Each expert prepared a paper reviewing the current state of the science in the designated area, identifying gaps in knowledge and making recommendations for research, education, policy, and practice. The papers underwent peer review and were revised according to reviewers' comments. Each symposium participant received the papers for review before the meeting.


During the symposium, the authors presented highlights of their papers. Attendees then participated in small-group discussions, a roundtable discussion, and plenary sessions to find consensus on research gaps and a research agenda, barriers to care, action strategies, and recommendations.


Symposium participants identified barriers to optimal care for long-term survivors of cancer that fell into three major categories: knowledge deficits, health care system barriers, and cost considerations. The specific barriers appear in Table 2 (page 56-page 57), along with strategies that symposium attendees identified to address the barriers.

Table 2 - Click to enlarge in new windowTABLE 2. Barriers to Optimal Care for Cancer Survivors and Strategies to Overcome Them
Table 2 - Click to enlarge in new windowTABLE 2. Continued

Symposium participants also identified major gaps in research. These were reformulated into a list of nursing research priorities. The research priorities focus on the nature and scope of problems and issues of long-term survivors of cancer, outcomes, access to care, education, and dissemination of information. Table 3 (page 58) presents the recommended research questions.

Table 3 - Click to enlarge in new windowTABLE 3. Recommendations for a Nursing Research Agenda for Long-Term Survivor Issues


Symposium participants concluded that the science and nursing approaches that address the needs of long-term cancer survivors are in the early stages. Interdisciplinary strategic planning is necessary to improve cancer survivorship outcomes.


Nursing leadership, coordination, and participation were affirmed as central to moving the agenda for cancer survivors forward. Nurses can and should lead the way, facilitating communication and collaboration and establishing the contribution of nursing with organizations engaged in improving survivorship care. The group reached consensus on the following recommendations:


* Shift the paradigm in cancer care to a wellness model that incorporates health promotion and disease prevention in all aspects of care.


* Support the development of a comprehensive national database of cancer survivors to facilitate comprehensive follow-up and surveillance.


* Develop and disseminate guidelines in evidence-based practice, education, and policy for all site-specific cancers; this will ensure that high-quality care is coordinated across specialties and settings. Until research is sufficient to develop evidence-based guidelines, create consensus-based guidelines.


* Improve access to care focused on the needs of long-term cancer survivors, regardless of socioeconomic level or health care setting.


* Conduct educational outreach for health care providers, survivors, and the general public, using culturally sensitive language and approaches.


* Expand research on survivor outcomes, focusing on quality of life and quality of care across all sociocultural groups, across the life span, and inclusive of all cancer diagnoses.


* Improve interdisciplinary and multidisciplinary collaboration and communication in order to deliver seamless, coordinated care.


* Advocate increased research funding, particularly for translational research that will generate results that can be readily applied in practice.


* Expand development and implementation of best practices for survivors of cancer across a variety of delivery systems.


* Encourage consultation with cancer survivors and front-line providers at every level, from the development of research priorities to clinical decision making and design of delivery systems.



Much work needs to be done to enhance both the quality of care and the quality of life for survivors of cancer. The work of the state of the science symposium contributes important directions to the growing knowledge base of cancer survivorship. Symposium participants expressed interest in further identifying how nurses could move the agenda forward and suggested convening a "next steps" meeting of key organizational stakeholders to identify appropriate ways to do so.




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