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J Oncol Pract. 2006 March; 2(2): 77–82.
PMCID: PMC2794624

Building a Bridge of Continued Care for Cancer Survivors

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A cancer diagnosis is no longer equivalent to a death sentence. Many patients come out on the other side of successful treatment and find that the longer life expectancy associated with cancer survivorship has burdens of its own. Their questions about these burdens, and the medical community's relative unfamiliarity with care for long-term survivors, has left them “lost in transition,” according to a recent report from the Institute of Medicine (IOM).1

The IOM Committee on Cancer Survivorship, chaired by Sheldon Greenfield, MD, of the University of California, Irvine (Irvine, California), urged a new focus on the period after cancer treatment. The goal of the 536-page report From Cancer Patient to Cancer Survivor: Lost in Transition is to improve the quality of life for the more than 10 million people in the United States who are adult cancer survivors. The report highlights medical, functional, and psychosocial consequences of cancer and its treatment and will help to define high-quality health care for cancer survivors, as well as specifies strategies to achieve its goals.

Ellen Stovall, president of the National Coalition for Cancer Survivorship (NCCS) and vice chair of the Committee on Cancer Survivorship: Improving Care and Quality of Life, has emerged as one of the leading thinkers on the survivorship issue. She notes that effective follow-up care for cancer survivors is challenged by several problems inherent in the health care delivery system. “There is no systematic way for an oncologist to transition a patient's care to another physician,” Stovall explains. “Also, there are no clear cut guidelines for when that transition should occur.” Lastly, she adds, “People are living for years or decades after the end of treatment with no clear road map.”

The end of treatment evokes very different responses from oncologists and their patients. For oncologists, the end of cancer treatment is rewarding when therapy has either eradicated disease or brought it into remission. However, for cancer survivors, the end of treatment has been described as a terrifying moment marked by grief, anxiety, and uncertainty. In the DVD complement to the IOM report, one survivor describes feeling like “a warrior with no war” once active treatment ended. Research confirms this survivor's experience, with studies indicating that the most frightening times for patients are before treatment starts and after treatment ends.

Patients' fears about their health future after cancer treatment are not unfounded. There have been recent reports on the long-term health issues confronting cancer survivors, including high risks for secondary cancers, as well as several comorbidities, such as diabetes, cardiovascular disease, osteoporosis, and reproductive disorders.2 Some of what is known about long-term effects has been derived from studies of survivors of childhood cancers, and the list of co-morbidities (including organ failure requiring transplantation, developmental delay and learning disorders, and other chronic diseases) is longer for the adult survivor population.3-5

The health concerns of survivors and the need for cancer follow-up raise questions for patients and primary care and nononcology specialty physicians:

  • What is the risk of recurrence for an individual patient based on the type of cancer and treatment?
  • What strategies are available to prevent recurrence or secondary cancers?
  • How often should screening tests be performed?

The specific expertise and knowledge base of oncologists usually makes them the ones best suited to determine the answers to these questions.

Oncologists should be at the forefront of defining the parameters of care necessary to ensure the health and quality of life for cancers survivors, according to Patricia Ganz, MD, of the University of California–Los Angeles Schools of Medicine and Public Health. Ganz served as a member of the committee that developed the IOM report and is extensively involved with survivorship initiatives, both within and outside of ASCO. In an editorial in the Journal of Clinical Oncology last year,6 Ganz encouraged oncologists to capitalize on the “teachable moment” that survivorship care provides. She wrote, “We have an opportunity to define what care of the cancer survivor should include and what each survivor can expect after completing their initial curative-intent therapy. Whether such ongoing care will be the responsibility of the oncologist or the primary care physician is not the main issue; however, oncologists must provide guidance and leadership in this area, because they are the most knowledgeable member of the health care team in understanding the potential exposures associated with cancer treatments and the potential for late effects.”

The question of who should provide long-term care for cancer survivors has generated some debate. In a recent survey conducted by the ASCO Cancer Prevention Committee, 79% of oncologists said they “always” or “sometimes” provided ongoing general medical care to the cancer survivors in their practice.6 In addition, 74% said that it was the role of the oncologist to provide continuing care to cancer survivors. However, a recent study7 published in the Journal of Clinical Oncology demonstrated that follow-up care with a primary care physician was a “safe and acceptable alternative” to oncology care for early breast cancer survivors. In that study, there were no significant differences in recurrence-related serious clinical events or in health-related quality of life measures between women receiving follow-up care from oncologists or from their primary physicians. In an accompanying editorial, Khatcheressian and Smith8 acknowledged that follow-up care provided by primary care physicians represents a “substantial change in practice and attitudes.” However, they concluded, “the evidence from multiple randomized clinical trials suggests that ASCO should begin partnering with our primary care colleagues and our shared patients to better improve the follow-up process.”

Indeed, survivorship issues have been a focus for ASCO, and ASCO President Sandra Horning, MD, has guided the development of several initiatives to address the needs of cancer survivors. Horning serves as co-chair of the ASCO Survivorship Task Force, which was established in 2004 by then–ASCO President David Johnson, MD. The Task Force is charged with oversight of the development, implementation, and management of ASCO survivorship programs. Ganz, who also serves as co-chair, hopes that the Task Force will “put itself out of business,” explaining, “I expect that the Task Force will have a limited lifespan. It won't be necessary to have a separate entity once we fully integrate survivorship issues into the fabric of ASCO programs and committees.”

Until then, the Task Force is providing direction for increased efforts after the release of the IOM report. ASCO is working with the NCCS, professional organizations, and government agencies to act on the 10 recommendations set forth in the report (see sidebar “Recommendations From IOM Report”).

The day after the IOM report was released last November, ASCO and the IOM, with additional support from the NCCS, hosted a day-long symposium on cancer survivorship. Horning, Ganz, and Stovall joined dozens of others in the oncology community to discuss strategies for implementing the recommendations. (Proceedings of this symposium will be available in April for download or purchase on the National Academies Press Web site at www.nap.edu.)

Establish Cancer Survivorship As a Distinct Phase of Care

The first recommendation in the IOM report is to establish cancer survivorship as a distinct phase of care. “It's not over when it's over,” says Ganz. “Cancer is unlike other chronic conditions, where you carry out prevention strategies and prevent complications upfront,” she notes. “We haven't organized health care to prepare for this phase [after treatment] systematically.”

One factor in establishing a distinct phase has been a difference in the definition of survivorship. The NCCS has defined survivorship as beginning at the time of diagnosis. However, defining survivorship as a distinct phase that occurs after the end of treatment will enable physicians to focus on specific patient needs that, for the most part, have not received adequate attention in the past. For example, psychosocial support is often needed but lacking after treatment ends. “There is a strong social environment during treatment,” says Stovall. “Support groups and other psychosocial interventions are important and act as a tether for many patients. Once treatment ends, that support is usually gone.”

A specific focus on care during the survivorship phase can also help to reduce the risk of the short-term and long-term physical effects of cancer through more appropriate screening and patient education. Studies have shown that survivors often initiate lifestyle changes to enhance their health. For this reason, the transition to survivorship care offers a prime opportunity for health care professionals to promote the importance of healthy lifestyle behaviors and to recommend specific strategies and interventions.2

Although survivorship issues should be the focus after treatment, they should also be factors considered throughout the continuum of care. Better clinical processes during the treatment planning stage can help to minimize health risks and effects. “Clinical practice has not caught up with the ability to make well-vetted decisions based on the literature,” says Stovall. Time is needed in the pretreatment stage to explore options and discuss potential risks and complications, using data to help select less toxic treatments. Ganz explains that specific examples of pretreatment considerations include weighing options to maintain fertility after treatment, careful planning of radiation therapy to avoid damage to normal tissues (e.g., the heart), and genetic counseling and testing for hereditary cancer predisposition genes that may affect primary treatment decisions.

Develop a Survivorship Care Plan

The IOM report also calls for the development of a survivorship care plan (see sidebar “Components of a Survivorship Care Plan”), which would provide the road map that Stovall indicates is necessary. This plan, to be completed by the treating oncologist, would include a summary of a patient's cancer and treatment, along with evidence-based guidelines for follow-up, both of which are critical to effective long-term care for cancer survivors. “The survivorship care plan is not only a tool for physicians but also an educational resource for patients,” says Ganz.

She adds that the survivorship care plan can help resolve a common problem—lack of communication among physicians. “Oftentimes, the primary care physician is left out of the loop,” Ganz says. “I know that even I'm at fault. I think we're all very good at writing up treatment recommendations for a consultation, but we're not as successful at writing a summary of the treatment once it ends.” The plan offers a systematic way for oncologists to share essential information with others involved in the care of cancer survivors.

By providing a summary of the type of cancer and treatments that were carried out, the survivorship care plan enables physicians to tailor survivorship care to the specific needs of each individual survivor. The components of the survivorship care plan clarify appropriate screening, prevention strategies for secondary cancers, potential long-term effects of treatment, and other similar information. Ganz emphasizes that it is essential to also document the specific roles of physicians in carrying out survivorship care.

In addition to helping to enhance the quality of care, the survivorship care plan empowers patients in several ways. First, the information in the plan helps reassure survivors helping them to know what to expect. Also, cancer survivors often do not know exactly what cancer treatments they have received, especially those who were treated for childhood cancers. Lastly, educating cancer survivors about healthy behaviors is an integral component of survivorship care, and the plan provides a convenient instrument to convey recommendations.

“ASCO is poised to be a leader in the area of survivorship care plans,” says Ganz. She notes that the Society is planning to create templates for the plan that can be integrated into electronic records. In addition, the ASCO Annual Meeting will feature the session “How to Write a ‘Survivorship Prescription,'” which she will lead.

To assess the value of the survivorship care plan, the National Cancer Policy Forum, NCCS, and ASCO are chairing a workshop this spring to design a demonstration project. “We have to test the real value of a survivorship care plan in terms of quality of care, quality of life, and treatment,” says Stovall. “Does it make a difference?” She adds that it is crucial for a broad range of attendees to participate in the workshop. “Medical oncologists, surgical oncologists, radiation oncologists, oncology nurses, primary care physicians, quality improvement agencies, patient advocates, government agencies—they all need to be in the room. We have to get everyone thinking about this,” she says.

Establish and Use Evidence-Based Guidelines to Manage Late Effects of Cancer and Its Treatment

The effective management of late effects of cancer and its treatment relies on evidence-based guidelines, and the IOM report recommends the establishment and implementation of such guidelines. ASCO is currently developing two key clinical practice guidelines. One guideline focuses on fertility preservation, which will help direct treatment decision making for physicians and their patients who wish to remain fertile. This guideline is expected to be published in late spring. The other guideline addresses several primary components in the long-term care and monitoring for survivors, including secondary cancers, cardiotoxicities, neuropsychologic effects, sexual dysfunction (physical and psychologic), and hormone replacement/osteoporosis/bone health. The development of this guideline is challenged by a small evidence base, a problem common to survivorship issues.

“There's not much research out there,” says Ganz, who is a member of the ASCO Long-Term Medical Care for Adult Cancer Survivors Expert Panel, which is charged with developing the clinical practice guidelines on survivorship issues. “Consequently, many recommendations must be based on consensus and best practices.” However, she adds that the development process for the guidelines identifies gaps in research, which in turn can foster much-needed studies.

Expand Educational Opportunities

The IOM report recommends the development of educational programs to help health care providers address the wide range of needs for cancer survivors. ASCO is involved in several efforts to educate oncologists about survivorship care. With the expansion of the Annual Meeting Patient Care track to include survivor care, the 2006 Annual Meeting will offer attendees the opportunity to enhance their knowledge about the long-term complications and sequelae of treatment, the interpretation of the risk for complications, and other important survivorship issues. The renamed Patient and Survivor Care track includes a variety of educational and scientific sessions (see sidebar “Sessions on Survivorship-Related Topics at 2006 ASCO Annual Meeting”), and more information about the sessions can be found in the Annual Meeting section of ASCO.org (www.asco.org).

The ASCO curriculum on cancer prevention, which is currently in development, includes a chapter devoted to survivorship issues. Authored by Ganz and Jacqueline Casillas, MD, a pediatric oncologist involved in the care of childhood cancer survivors, the chapter addresses a broad range of late effects, including endocrine, neurologic, cardiovascular, pulmonary, musculoskeletal, neurocognitive, gastrointestinal, psychosocial, dental, and ophthalmic effects. The chapter also provides information on screening for late effects and strategies for long-term follow-up care. In addition, each chapter in the curriculum includes a focus on survivorship issues relevant to the chapter topic.

ASCO has also added survivorship as a key component of the recently updated ASCO Core Curriculum Outline (ACCO) for medical oncology training.9 The ACCO framework includes such topics as follow-up care (surveillance, screening for second cancers, and monitoring for short-term and long-term effects), prevention of secondary cancers, special interventions for survivors with a hereditary predisposition, psychosocial issues, employment and insurance, and advocacy.

Develop Quality of Survivorship Care Measures

Another recommendation to enhance the care of survivors is the development of quality measures. Stovall notes that these measures should be incorporated into ongoing quality programs, such as ASCO's Quality Oncology Practice Initiative (QOPI) and others. “We're not looking to reinvent the wheel,” she says. “We need to maximize our efforts to get survivorship care into clinical practice.” Identifying challenges is a first step, Stovall adds. “What are the impediments? Reimbursement? Lack of templates? Lack of research? Lack of time? We need to figure this out.”

To help answer these questions, ASCO and NCCS partnered to establish the Cancer Quality Alliance, a consortium of several organizations, including the American Board of Internal Medicine. The Alliance was formed to foster collaboration among organizations in the cancer community that are committed to improving the quality of cancer care. Ganz and Stovall serve as co-chairs of the Alliance.

“The goal of the Cancer Quality Alliance is to become a national voice for high-quality cancer care,” says Ganz. “Through this new partnership, we can put the systems in place to ensure that all people with cancer receive the best care possible.” Stovall adds, “The Centers for Medicare & Medicaid Services has put a high priority on advancing initiatives for high-quality health care, so there is no better time than now to bring together strong organizations with creative ideas for quality improvement. With the Alliance, we can encourage quality monitoring and improvement mechanisms that will guarantee a high level of care for all people with cancer.”

As ASCO continues its partnerships and initiatives designed to enhance the care of cancer survivors, the Society encourages practicing oncologists to take their own steps toward achieving the goals set forth in the IOM report. Frank conversations with patients about what to expect at the end of treatment, open communication with primary care physicians and other health care providers, and appropriate referrals to address psychosocial issues are essential to ensuring that patients' needs are met beyond active treatment (see sidebar “What Cancer Survivors Need”). In addition, oncologists are encouraged to take advantage of opportunities to learn more about survivorship issues and survivorship care plans and to participate in research to advance the science of this important area in oncology.

Commenting on the overall goal of survivorship care, Stovall says, “At the end of it all, what's the satisfaction? Lives are lived better. That's a reward for everybody.”

Recommendations From the IOM Report From Cancer Patient to Cancer Survivor: Lost in Transition

  1. Health care providers, patient advocates, and other stakeholders should work to raise awareness of the needs of cancer survivors, establish cancer survivorship as a distinct phase of cancer care, and act to ensure the delivery of appropriate survivorship care.
  2. Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “survivorship care plan” should be written by the principal provider(s) who coordinated oncology treatment. This service should be reimbursed by third-party payers of health care.
  3. Health care providers should use systematically developed, evidence-based clinical practice guidelines, assessment tools, and screening instruments to help identify and manage late effects of cancer and its treatment. Existing guidelines should be refined, and new evidence-based guidelines should be developed through public- and private-sector efforts.
  4. Quality of survivorship care measures should be developed through public-private partnerships and quality assurance programs implemented by health systems to monitor and improve the care that all survivors receive.
  5. The Centers for Medicare & Medicaid Services (CMS), National Cancer Institute (NCI), Agency for Healthcare Research and Quality (AHRQ), Department of Veterans Affairs (VA), and other qualified organizations should support demonstration programs to test models of coordinated, interdisciplinary survivorship care in diverse communities and across systems of care.
  6. Congress should support the Centers for Disease Control and Prevention (CDC), other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans.
  7. The National Cancer Institute (NCI), professional associations, and voluntary organizations should expand and coordinate their efforts to provide educational opportunities to health care providers to equip them to address the health care and quality-of-life issues facing cancer survivors.
  8. Employers, legal advocates, health care providers, sponsors of support services, and government agencies should act to eliminate discrimination and minimize adverse effects of cancer on employment, while supporting cancer survivors with short-term and long-term limitations in ability to work.
  9. Federal and state policy makers should act to ensure that all cancer survivors have access to adequate and affordable health insurance. Insurers and payers of health care should recognize survivorship care as an essential part of cancer care and design benefits, payment policies, and reimbursement mechanisms to facilitate coverage for evidence-based aspects of care.
  10. The NCI, CDC, AHRQ, CMS, VA, private voluntary organizations such as the American Cancer Society, and private health insurers and plans should increase their support of survivorship research and expand mechanisms for its conduct. New research initiatives focused on cancer patient follow-up are urgently needed to guide effective survivorship care.

*Adapted with permission from Hewitt M, Greenfield S, Stovall E: From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC, National Academies Press, 2006.

Components of a Survivorship Care Plan

The essential components of a survivorship care plan include a detailed summary of all diagnostic testing and treatments, as well as available evidence-based standards of care.

Summary of Care

  • Diagnostic tests and results
  • Tumor characteristics, including site(s), stage, grade, hormone status, biomarker results
  • Details on treatment
    • Type of treatment (surgery, chemotherapy, radiation, transplantation, hormone therapy, gene therapy, or other)
    • Agents used (regimen, total dosage)
    • Beginning and ending dates
    • Indicators of response
    • Toxicities
  • Support services provided (psychosocial, nutritional, other)
  • Contact information for treating institutions and key individual providers
  • Name of key point of contact and coordinator of continuing care

Evidence-Based Follow-Up Care

  • Likely course of recovery from treatment toxicities
  • Need for ongoing health maintenance/adjuvant therapy
  • Recommended cancer screening and other periodic testing/examination, including schedule and providers
  • Possible late and long-term effects of treatment and their symptoms
  • Possible psychosocial effects (marital/partner relationships, sexual functioning, work, parenting) and potential need for psychosocial support
  • Possible insurance, employment, and financial consequences and referrals for appropriate counseling, as necessary
  • Specific recommendations for lifestyle changes to promote health
  • Genetic counseling and testing
  • Known effective chemoprevention strategies
  • Cancer-related resources

Sessions on Survivorship-Related Topics at 2006 ASCO Annual Meeting

Survivorship-related topics are the themes for several sessions in the Patient and Survivor Care track at this year's Annual Meeting. Among the sessions are the following:

  • How to Write a “Survivorship Prescription”
  • Developing Cancer Survivorship Programs: Lessons From Successful Initiatives
  • How to Interpret and Communicate the Risks of Therapy-Related Complications
  • Fertility and Pregnancy Dilemmas Facing Young Women With Cancer
  • Lifestyle Modification in Women With Breast Cancer: Basic Mechanisms, Clinical Studies, and Practical Advice
  • Fertility Sparing for Patients Undergoing Cancer Therapy
  • Novel Therapeutics and Their Effects on the Skin
  • Applied Pharmacoepidemiology and Pharmacogenomics in Predicting Drug Toxicity
  • Understanding the Long-Term Consequences of Breast Cancer: Emerging Scientific and Humanistic Issues
  • Survivorship Issues in Genitourinary Malignancies
  • Getting Savvy With Opioids to Manage Cancer Pain: Routes, Rotations, and Interventions
  • Chemoradiation for Head and Neck Cancer: Patient Selection, Supportive Medical Care and Speech/Swallowing Rehabilitation
  • Impact of Parental Cancer on Children: What Every Clinician Needs to Know

A complete list of sessions in the Patient and Survivor Care track can be found in the Annual Meeting section of ASCO.org (www.asco.org).

What Cancer Survivors Need

  • Knowledge of what to expect after treatment
  • Effective follow-up care
  • Physicians communicating with each other
  • Belief in the possibility of a healthy future
  • Insurance coverage
  • Fair treatment at work

References

1. From Cancer Patient to Cancer Survivor: Lost in Transition in Hewitt M, Greenfield S, Stovall E (eds.).Washington, DC, The National Academies Press, 2005
2. Demark-Wahnefried W, Aziz NM, Rowland JH, et al: Riding the crest of the teachable moment: Promoting long-term health after the diagnosis of cancer. J Clin Oncol 23:5814-5830, 2005. [PMC free article] [PubMed]
3. Bowers DC, McNeil DE, Liu Y, et al: Stroke as a late treatment effect of Hodgkin's disease: A report from the Childhood Cancer Survivor Study. J Clin Oncol 23:6508-6515, 2005. [PubMed]
4. Zebrack BJ, Gurney JG, Oeffinger K, et al: Psychological outcomes in long-term survivors of childhood brain cancer: A report from the Childhood Cancer Survivor Study. J Clin Oncol 23:999-1006, 2004. [PubMed]
5. Oeffinger KC, Mertens AC, Sklar CA, et al: Prevalence and severity of chronic diseases in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. J Clin Oncol 23:9, 2005. (suppl)
6. Ganz PA: A teachable moment for oncologists: Cancer survivors, 10 million strong and growing! J Clin Oncol 23:5458-5460, 2005. [PubMed]
7. Grunfeld E, Levine MN, Julian JA, et al: Randomized trial of long-term follow-up for early-stage breast cancer: A comparison of family physician versus specialist care. J Clin Oncol 24: 10.1200/JCO.2005.04.5153 [PubMed] [Cross Ref]
8. Khatcheressian JL, Smith TJ: Randomized trial of long-term follow-up for early-stage breast cancer: A comparison of family physician versus specialist care. J Clin Oncol 24: 10.1200/JCO.2005.04.5153 [PubMed] [Cross Ref]
9. Muss HB, Von Roenn J, Damon LE: ACCO: ASCO Core Curriculum Outline. J Clin Oncol 23:2049-2077, 2005. [PubMed]

Articles from Journal of Oncology Practice are provided here courtesy of American Society of Clinical Oncology