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The Survivorship Care Plan: What, Why, How,
and for Whom
Craig C. Earle, Deborah Schrag, Steven H. Woolf, and Patricia A. Ganz
Overview
This chapter highlights the recent call by the Institute of Medicine for the use of a cancer survivorship plan to be pro- vided to patients and their primary care providers at the end of cancer treatment. The need for evidence-based guidance on surveillance regimens after cancer treatment, how best to communicate what cancer treatments were received, and what care should be provided after treatment, as well as mechanisms to share care between oncology specialists and primary care providers is discussed. With the expanding number of cancer survivors each year, oncologists must find creative ways to ensure that the gains obtained through suc- cessful cancer treatment are not lost when patients transition to this phase of their care.
Introduction
In the past two decades, the 5-year survival rate for the top 15 cancers has increased from 42.7% for men and 56.6% for women, to 64% for men and to 64.3% for women.1Figures 22.1 through 22.4 provide the most recent statistics available on cancer survivors from the National Cancer Institute Office of Cancer Survivorship, with an estimate that there were more than 10.1 million cancer survivors in the United States in 2001.2 With this medical and demographic imperative, the Institute of Medicine (IOM), under the auspices of the National Cancer Policy Board, undertook a detailed study of adult cancer survivors, with a focus on “the period following first diagnosis and treatment before the development of a recurrence of cancer or death.”3This distinct phase in the tra- jectory of cancer care has not been well described or addressed by the healthcare system previously.3
Recommendation number two of this IOM report states,
“Patients completing primary treatment should be provided with a comprehensive care plan summary and follow-up care plan that is clearly and effectively explained. The ‘Survivor- ship Care Plan’ should be written by the principal provider(s) who coordinated oncology treatment. This service should be reimbursed by third-party payors of health care.”3To this end,
this article provides a framework and rationale for the sur- vivorship care plan, including important information about surveillance care after primary cancer treatment ends, how oncologists can prepare a treatment summary and survivor- ship care plan, and a description of the shared care model between specialists and primary care providers as a way to enhance the quality of care for cancer survivors. We realize that, practically speaking, a formal survivorship care plan will take some time to implement and make a routine part of oncology care. Nevertheless, the findings and recommenda- tions of the IOM report suggest that many cancer survivors are “lost in transition” and that the quality of care suffers when patients and providers do not know what is expected at the end of treatment. This article and educational session are one among many educational efforts that the American Society of Clinical Oncology (ASCO) has embarked on to inform ASCO members about the needs of cancer survivors and how oncology professionals can make a difference in their care.
Surveillance After Cancer
Most oncologists focus on surveillance for recurrent cancer after primary treatment, but it is important to recognize that surveillance may also need to be considered for new primary cancers in the same organ or for secondary cancers or treat- ment-induced late effects. In addition, cancer survivors are also an important audience for healthpromotion and disease- prevention activities.4,5As an example, this article focuses on recent changes in ASCO guidelines for colorectal cancer surveillance, to initiate a discussion of the general issues involved regarding surveillance and the evidence behind specific recommendations.
Among the recently updated ASCO recommendations for surveillance after primary treatment of stage II and III col- orectal cancer,6the recommendation for “annual computer- ized tomography of the chest and abdomen for 3 years after primary therapy for patients who are at higher risk of recur- rence and who could be candidates for curativeintent surgery”
is most notable. This statement brings up several issues. It
22
prompts reflection on the more general rationale for, evid- ence behind, and sometimes unintended effects of intensive follow-up strategies for patients with cancer. It also alludes to the incorporation of risk prediction in surveillance and
selection of patients for follow-up based on their presumed fitness levels for further therapy.
Patients are willing to accept the notion of surveillance.7 Having gone through regimented cancer treatments and con- stant contact with their oncology providers, many are reas- sured by the sense of control that a follow-up regimen can provide—somebody knows what should be done. Physicians also desire this, but does this provide false reassurance?8In most cases physicians do not have high-quality evidence on which to decide what constitutes optimal surveillance, and there is little agreement on recommendations among experts.9 In many situations, there is not even a plausible rationale for intense monitoring of patients who are asymp- tomatic to find incurable recurrence.
The reason usually offered for following patients with cancer is to increase their survival by detecting local or distant disease at a time when it is still curable or when pal- liative treatment can be more effective. Surveillance strate- gies generally consist of some combination of office visits
1971 1973 1975 1977 1979 1981 1983 1985 1987 1989 1991 1993 1995 1997 1999 2001 0
Year 2,000,000
4,000,000
Number
6,000,000 8,000,000 10,000,000 12,000,000
Other 17%
Lung 3%
Melanoma 6%
Hematologic (HD, NHL, Leukemia)
7%
Other Genitourinary (Bladder & Testis)
7%
Gynecologic 10%
Colorectal 10%
Prostate 18%
Female Breast 22%
19 Years or Younger
1% 20 to 39 Years 5%
40 to 64 Years 65 Years 33%
or Older 61%
FIGURE 22.2. Estimated number of people alive in the United States diagnosed with cancer by current age (Invasive/First primary case only, 10.1 million survivors).
FIGURE 22.1. Estimated number of cancer survivors in the United States from 1971 to 2002. Prevalence counts were estimated by apply- ing U.S. populations to SEER 9 and historical Connecticut Limited Duration Prevalence proportions and adjusted to represent complete prevalence. Populations from January 2002 were based on the average of the July 2001 and July 2002 population estimates from the U.S.
Census Bureau. Abbreviations: SEER, Surveillance, Epidemiology and End Results.
FIGURE 22.3. Estimated number of people alive in the United States diagnosed with cancer by site (10.1 million). Abbreviation: HD, Hodgkin’s disease; NHL, non-Hodgkin’s lymphoma.
All other sites 14%
Oropharyngeal 3%
Testis 4%
Lung 4%
Melanoma 7%
Hematologic 8%
Urinary Bladder 8%
Other Ovary 14%
Lung 3%
3%
Cervix 4%
Thyroid 4%
Melanoma 6%
Hematologic
6% Colorectal
10%
B. Women
Corpus & Uterus 10%
Breast 40%
A. Men
Colorectal 11%
Prostate 41%
FIGURE 22.4. Estimated number persons alive in the United States diagnosed with cancer on January 1, 2002 by time from diagnosis and sex (Invasive/First primary cases only, 10.1 million survivors).
with history and physical examination, blood work including tumor markers, imaging studies, and visualization of the primary organ, for example, with endoscopy or second-look surgery. Surveillance of the primary tumor site can occasion- ally detect treatable local recurrences, for example, in rectal as well as breast and head and neck malignancies. However, in other examples, second-look surgeries for ovarian and pan- creatic cancers have not been associated with improved outcomes because such recurrences are generally not curable.10In colon cancer, local recurrences are uncommon.
Colonoscopy, therefore, is primarily used to find synchronous or metachronous second primaries.
The media have persuaded the public that if cancer is found early, it can be cured. However, patients often do not under- stand that the same does not pertain to early detection of in- curable distant metastases. Unfortunately, there is a paucity of evidence that early institution of palliative chemotherapy in asymptomatic patients provides benefit.7,11An exception might be surveillance for metastases in colorectal cancer, where a small proportion of patients who recur with oligometastatic disease can receive local therapy for cure.12 There have been seven randomized trials comparing different surveillance strategies in colorectal cancer.13–19 Although most were underpowered to show benefit individually, meta- analyses have indicated that trials in which patients received more intensive surveillance showed a greater survival advan- tage than trials with less intensive surveillance.20,21
The use of imaging studies is often the most controver- sial aspect of surveillance because these studies are relatively expensive and are usually only able to find distant, often incurable, recurrence. Even in examples with a strong ratio- nale where salvage therapies are clearly more effective when the tumor burden is low, the majority of relapses present with signs, symptoms, or abnormalities on blood work (e.g., lactate dehydrogenase in lymphoma).22 The new colorectal surveil- lance recommendation to image the liver and lungs annually in patients at higher risk is based on recent meta-analyses demonstrating 25% lower mortality for patients undergoing surveillance schedules that include imaging.21,23,24
Tailoring surveillance to risk seems logical. Concentrate on following high-risk patients at a time when they are most likely to experience recurrence. However, there is little evi- dence that following high-risk patients more intensively is either more effective or more cost effective than following all patients similarly in most cases. Because high-risk patients are more likely to experience recurrence, surveillance will cer- tainly find more recurrences in these patients.25However, it is possible that those recurrences will tend to become clini- cally evident relatively quickly anyway, and curative therapy may be less likely to succeed than in the case of more indo- lent cancers that relapse. Indeed, it has been observed that patients with node-negative primaries who relapse late are more likely to be cured with metastatectomy.12Consequently, it may be best to follow lower-risk patients more closely and to do so in later years in order to pick up those indolent relapses that may be most amenable to curative therapy.
However, there is no direct evidence supporting this approach.
The common caveat that surveillance need only be applied to patients willing and able to undergo aggressive surgery also can be challenged. Patient preferences can change dramatically with the passage of time from initial therapy and once recurrence is a reality. Further, new technologies
for management of oligometastases, such as percutaneous radiofrequency ablation and stereotactic radiosurgery,26 are increasing the options for medically-frail patients. As a result, it is not clear that such patients should necessarily be excluded from surveillance recommendations.
In cases in which we cannot reasonably expect survival to be improved, we tend to think that surveillance at least provides important reassurance to patients. However, even this benefit is debatable.27,28 Although being told that there is no sign of cancer recurrence can understandably decrease anxiety,29the stress leading up to it, the inconvenience and often the discom- fort of testing, and the not infrequently detected incidental abnormalities are instances in which surveillance causes harm.25,30False-positive results cause mental anguish and usu- ally lead to further tests, possibly invasive ones such as biopsy, that add expense and can lead to other complications. Indeed, randomized trials have not been able to consistently find posi- tive psychologic effects associated with surveillance.7,28
There are many other reasons to follow patients with cancer, including monitoring for long-term or late effects of treatment (e.g., hypothyroidism, lymphedema, new cancers), detecting and preventing potentially catastrophic complications of recur- rence, or providing general primary care. Instituting a surveil- lance program can be less time consuming and emotionally charged than explaining the evidence and rationale behind a less-aggressive strategy. Moreover, even fully informed patients who relapse may direct their anger at physicians who they may feel missed something if follow-up monitoring was not done.20 Most compelling, however, can be patient preference—some patients may want to know that their cancer has recurred, even if they are asymptomatic and their survival cannot be prolonged, to best make life decisions going forward.
Current surveillance practices are based more on consen- sus, tradition, patient demands, medical and legal concerns, and the constraints of third-party payors than on a large body of evidence. Follow-up after cancer seems like a good idea, and in some cases can be important. However, it also comes with costs, both economic and otherwise. Physicians must be aware of its limitations and be honest with patients about its worth. Decisions about posttreatment surveillance strategies are sometimes complex and involve weighing knowledge of patients’ preferences and their ability to withstand intensive medical interventions should recurrence be detected. Specifi- cally, communicating with patients at the completion of treat- ment to specify the surveillance plan may be quite valuable.
Rationale for a Treatment Summary and Survivorship Care Plan
When physicians want to know what surgical treatment a patient with cancer has had they now to ask for two critical documents: the operative report and the pathology report.
Thus, even when faced with a thick stack of medical records, these physicians are able to navigate quickly to key informa- tion. Although these documents do not provide a summary of postoperative complications, they use a standardized format to describe the reason for performing the operation, the pro- cedure planned and actually performed, and any immediate complications. Similarly, in radiation oncology, the concept of a radiation treatment summary is widely accepted; this succinct document describes the reason for radiation, the area
irradiated, the treatment planned, and the treatment actually delivered. Radiation oncologists may use different templates for this summary, some providing more or less accompanying narrative detail. However, the culture of radiation oncology is for all providers to prepare some version of this key document.
Other providers recognize this and know to ask for it.
In contrast to radiation and surgical treatments, which are more discrete episodes of cancer care, a chemotherapy regimen has less distinct boundaries. A regimen may be given once or more during a period of years, and thus the amount of information that needs to be summarized may vary tremendously. In some instances, patients may initiate a three-drug regimen, develop an allergy to one drug, and have a component of the initial regimen discontinued or substi- tuted for an alternative. Patients sometimes take holidays from treatment to attend to personal obligations. In this fashion, the boundaries surrounding what constitutes an episode of administration of a chemotherapy regimen or course of treatment is less distinct. Nevertheless, it is possi- ble to identify what is meant by a “chemotherapy treatment regimen” and to develop consensus standards.
Currently, there are three main reasons for medical oncologists to consider a cancer treatment plan, treatment summary, and survivorship care plan. The first reason is the need to communicate with other oncology and nononcology providers about the patient’s past care. For example, a cardi- ologist must know how much doxorubicin a patient received, or a primary care physician must know that the patient received radiation therapy to the neck and is at risk for hypothyroidism in the future. A cancer treatment plan out- lining the planned regimen (including chemotherapy radia- tion, surgery, or other therapies) and a treatment summary describing how treatment was tolerated and the outcomes of care, could streamline communication among cancer providers as well as with primary care providers who subse- quently follow cancer survivors.
The second reason for these plans is to facilitate commu- nication with the patient/survivor. Review of the information in the treatment plan may help the patient understand the purpose of treatment and structure conversations about the response to therapy and subsequent decision making.
Later, this same document can be amended into a treat- ment summary—what treatments were completed as planned, what toxicities were experienced, and what poten- tial late effects should be anticipated. Furthermore, in a forward-looking component—the survivorship care plan—the oncology provider can communicate the surveillance needs (as known at the moment) and any areas that need ongoing psychosocial care or follow-up.
Finally, having an explicit document that initially des- cribes the treatment plan and follows with the treatment summary and survivorship care plan facilitates ongoing mon- itoring of quality of care. To evaluate the quality of cancer care, it is not necessary to know the exact number of mil- ligrams of every treatment dose, nor is it necessary to know the specifics of every single dose delay and reduction. Simply knowing what drugs were delivered, with what purpose and what outcomes, would move the field far ahead of where it is today. Withdrawal of drugs from the market and the emer- gence of safety concerns for new chemotherapy drugs after regulatory approval highlight the need for monitoring be- yond registration trials. When a chemotherapy drug is noted
to have a new or unexpected effect, it would prove invaluable to quickly characterize the experience of large numbers of patients who have been exposed to a particular agent or com- bination of agents. The ability to obtain this information expeditiously from the medical record would be greatly enhanced if summary documents were standardized and elec- tronically searchable. This would stand in stark contrast to the current system of myriad chronologically organized clin- ical notes with minimal consistency across practice sites.
A chemotherapy treatment plan is conceived of as a suc- cinct summary document that should typically require a single side of a page. It should indicate the cancer site, histol- ogy and stage, and the reason for chemotherapy administra- tion. If treatment is delivered for advanced disease, the plan should indicate whether the patient is symptomatic or is receiving treatment for biochemical or radiographic evidence of disease. The summary should include the name of the regimen, the name of the component drugs in the regimen, and the starting dosages. The number of planned cycles and the strategy for assessing response should be included.
A chemotherapy treatment summary is conceived of as a succinct summary document that also should require no more than a single side of a page. It should be prepared at the end of a course of treatment. This may include at comple- tion of adjuvant therapy, at disease progression through a chemotherapy agent, or at discontinuation of a regimen sec- ondary to toxicity. The treatment summary should indicate how many cycles were delivered and whether any drugs were dropped from the regimen. This summary should review major toxicity, such as the need for hospitalization or complications such as febrile neutropenia. The treatment summary should describe the response to treatment (based on radiographic, biochemical, or clinical criteria or combinations thereof). The document should also provide the reason for treatment discontinuation and the planned next steps (e.g., hospice care, an alternative regimen).
The survivorship care plan should synthesize all the treatments received as part of the initial cancer treatment (surgery, radiation, chemotherapy, other) and should include the following: date of diagnosis, stage of cancer, diagnostic tests performed and results, acute toxicities on treatment, expected late effects from treatment, psychosocial and sup- portive care needs in follow-up, and identification of providers who will coordinate specific aspects of continuing care. In addition, the plan should include recommended surveillance for recurrence and new cancers, specific recom- mendations for health behaviors, and, when appropriate, genetic testing and screening for first-degree relatives.3
Changing the culture of medical records documentation will not be easy and, ultimately, will only be successful if it is linked to reimbursement and requirements from healthcare payors. Preparation of these documents should be valued as a visit of high care complexity, as it necessarily involves coor- dination and specific consultation time with the patient.
With a modicum of change and restructuring, it should be possible to facilitate coordination and communication about cancer care and the ability to more readily track cancer treat- ment histories in medical records. This initiative would be easiest to implement if standardized forms, ideally in elec- tronic digitized format, are made freely available. As a first step, extensive pilot work will be necessary to develop forms that work across practice sites.
The Role of Primary Care in Cancer Survivorship Primary care physicians play an important role in the deliv- ery of survivorship care. The largest proportion of physician office visits for cancer care—32%—is made to primary care physicians, compared with 18% for oncologists.31Cancer care specialists lack the time and workforce size to provide follow-up care to the nation’s growing population of cancer survivors. Primary care clinicians are better positioned and qualified to ensure that the full spectrum of cancer survivors’
health needs are addressed, including not only issues sur- rounding their cancer(s) but also health maintenance (pre- vention), the management of concurrent comorbid disease (e.g., heart disease, diabetes), mental health, and acute care.
Primary care physicians face formidable challenges, however, in providing survivorship care. The fact that the patient was previously diagnosed with cancer may itself be unknown to the primary care clinician, and even when this history is obtained, records of the specific diagnosis and treat- ment regimen may be unavailable. Even if the diagnosis and treatment are clear, evidence-based practice guidelines on rec- ommended follow-up are lacking, leaving clinicians in doubt about what they should do. Primary care clinicians lack expertise in specialized aspects of survivorship care, and their responsibilities of dealing comprehensively with a range of healthcare issues leaves limited time to focus on survivorship issues.32,33
When faced with similar challenges in managing other complex diseases, primary care clinicians work closely with specialist colleagues to obtain guidance on appropriate follow-up and to refer patients to specialists when the patients’ needs exceed their capabilities and expertise. This model does not always work well in collaborations between primary care and cancer specialists, in part because of the complexity of cancer care and the inadequate communication of treatment plans and summaries noted earlier. Primary care clinicians frequently report a fear of “losing” their patients to cancer specialists and limited correspondence or communi-
cation regarding the care their patients receive from special- ists, and they often discover—once patients do return to the primary care setting—that other health needs unrelated to cancer have “fallen through the cracks” during the patient’s absence.
Recommendations issued by the IOM Committee on Adult Cancer Survivorship3 provide an important starting point for addressing many of these challenges:
• The visibility given to the committee report and other cancer survivorship initiatives should make primary care clinicians more aware of survivorship as an important, but neglected, clinical entity.
• The difficulty that primary care clinicians face in obtain- ing details about the prior diagnosis and treatment would be mitigated by the proposed survivorship care plan. The IOM report provides recommendations on strategies to make the plan accessible to clinicians who are separated by geography or time from the setting in which the cancer was first treated, thereby providing details to new clini- cians, even decades later.
• The lack of clear guidelines on the optimal content of sur- vivorship care would be addressed by the effort of medical specialty societies, especially primary care organizations, to develop consensus recommendations for primary care practice. Support for randomized trials of regimens in sur- vivorship care is essential to produce the data on which evidence-based guidelines can be developed.
• The need for primary care clinicians to collaborate with cancer specialists to ensure the delivery of highquality survivorship care is addressed by the “shared care” model discussed in the IOM report. Under the shared care model, both the primary care clinician and the cancer specialist merge their resources and talents to offer the patient a combination of comprehensive and expert care. The respective roles of the primary care clinician and cancer specialist are outlined in Table 22.1.
TABLE 22.1. Roles under shared care model.
Primary care clinician Cancer care specialist
Attend to the breadth of patients’ physical and mental health issues. Ensure that the cancer survivor receives care for all health conditions and for preventive care, thereby imporving cancer survivorship and preventing and reducing complications from cancer and other important diseases.
Deliver chronic care needs that are feasible in the primary care setting. Take responsibility for conducting examinations and ordering tests that are recommended for the cancer survivor and that can be performed or arranged in the primary care settling.
These tasks generally do not require the dired involvement of cancer specialists, whose time can be better applied toward dealing with new patients and those with complications.
Refer patient to cancer specialist(s) for periodic evaluations and issues requiring focused expertise. Identify circumstances or complications that require cancer survivors to be seen by specialists and refer patients for periodic evaluations at on agreed frequency.
Consult with specialists in areas of uncertainty. Whether referrals become necessary, contact specialty colleagues to discuss questions or concerns and to determine which follow-up steps should be taken, either by the primary care practice or by the specialist.
Provide guidance and specialized treatment, as indicated. See the cancer survivor for periodic evaluations at recommended intervals, provide guidance to the primary care clinician as questions or concerns arise, and see patients for circumstances or complications that exceed the capabilities of the primary care clinician.
Keep the primary care clinician informed of the treatment plan.
Provide written guidance to the primary care clinician to include in the chart as a reference for next steps, both at the time of initial discharge, when the cancer survivorship care plan is first developed, and as treatment needs evolve with time.
Return the patient to primary care for ongoing needs. Both during and after the period when the patient is being seen by the cancer specialist, ongoing primary care is important to maintain treatment of other comorbid conditions and to follow up on implemenliation of the care plan initiated by the cancer specialist.
• To fulfill the ideals of the shared care model, several chal- lenges must be overcome. Chief among these is that primary care clinicians and cancer specialists must reach a common understanding about expected components of care and their respective roles. To some extent, this under- standing requires specialists to acquire greater confidence in the ability of primary care clinicians to manage com- ponents of care. Primary care clinicians, in turn, must be conscious of their limitations and engage specialty col- leagues when they need help. The collaboration requires a common playbook—for both parties to agree on what must be done and who will do it—and clear communi- cation. Primary care clinicians should copy cancer specialists on relevant progress notes, test results, and correspondence. Cancer specialists should copy the primary care clinician with similar information and should provide a standard consultation report when pa- tients are referred from primary care. Shared care works best when it is supported by the infrastructure of the healthcare delivery system in which the clinicians operate and by the managers responsible for the system. Features of such a system include easy transfer of medical records, streamlined referrals, seamless “handoffs,” and other fea- tures that spare patients the disruption caused by frag- mented care.
• These features are evident in certain communities that exhibit excellent coordination between primary and spe- cialty care of cancer survivors, but elsewhere in the United States there is more work to be done to cultivate these conditions, in particular to shift attitudes and expec- tations about the acceptability of shared care. This stands in contrast to the standard practice of shared care of other diseases, which is hardly a novel concept in primary care.
According to the 2002 National Ambulatory Care Out- comes Survey, 18% of office visits to primary care clini- cians involve shared care.31
• Primary care clinicians and specialists are accustomed to working together in familiar roles in the management of other complex conditions. For example, on a daily basis, primary care clinicians manage coronary artery disease and heart failure, know when to consult cardiology col- leagues when a coronary event occurs, and work together in shared roles as patients are hospitalized or suffer com- plications. Primary care clinicians manage other chronic conditions that, like cancer, involve complex medical concepts, rapidly evolving guidelines, and the need for expert input when problems arise. Examples include human immunodeficiency virus infection, diabetes, chronic renal insufficiency, bipolar disorder, Parkinson’s disease, inflammatory bowel disease, and seizure disor- ders. Building similar working relationships to care for cancer survivors provides a promising model for integrat- ing the best assets of primary and specialty care to ensure optimal delivery of quality service to patients.
Conclusion
The IOM report on adult cancer survivors3provides a chal- lenge as well as potential strategies for helping patients with cancer successfully transition into the phase of survivorship care beyond initial treatment. ASCO is well positioned to
respond to this challenge through the development of cancer survivorship guidelines, the promotion of tools and strategies to facilitate the implementation of the survivorship care plan in clinical practice, and educational collaboration with the professional organizations of primary care providers and other clinicians who share in the ongoing care of cancer survivors.
At the local level, individual ASCO members in clinical prac- tice can work to implement the shared care model within their own practice communities. With the expanding number of cancer survivors each year, we must find creative ways to ensure that the gains obtained through successful cancer treatment are not lost when patients transition to this phase of their care. What is outlined in this article is a suggested beginning.
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