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. Author manuscript; available in PMC: 2015 May 13.
Published in final edited form as: Fed Pract. 2011 Sep 1;28(Suppl 6):43S–49S.

Cancer Survivorship Care: Summarizing the 6 Tools for Success

Paulette Mehta 1, David A Haggstrom 2, David M Latini 3, Ellen A Ballard 4, Jennifer Moye 5
PMCID: PMC4429039  NIHMSID: NIHMS666888  PMID: 25983533

Abstract

With nearly 12 million cancer survivors living in the United States today—including those receiving care within the VHA—attention is quickly shifting toward care of the cancer survivor. Although challenging, these authors offer essential tools for long-term management of this fast-growing population.

Cancer survivorship is an emerging field of clinical practice. As of January 2008, it is estimated that there are 11.9 million cancer survivors in the United States. In the general population, most cancer survivors are women (54%), and 59.5% are over 65 years of age; most have been survivors for 5 years or more (64.8%), but significant numbers have survived for more than 10 or 25 years (40.2% and 9.4%, respectively).1 In contrast, cancer survivors within the VHA are mostly men (97%), with 84% older than age 60.2

Cancer survivors are susceptible to a plethora of complications from cancer and its treatment (Table 1), including cancer-related posttraumatic stress disorder (PTSD), depression, and fears of recurrence.3-5 Long-term psychological effects have been variably attributed to social isolation during treatment and closeness to death. These may be exacerbated by preexisting PTSD,6 medications (for example, steroids), and radiation therapy, especially if targeted at the central nervous system (CNS). Cancer survivors may also have problems in social relationships and employment, and with insurance.7 Cognitive impairment associated with treatment may lead to dementia in a significant subset of patients,8 particularly those receiving radiation to the CNS, those taking steroids, or those who have genetic predisposing factors.

Table 1. Complications related to underlying cancer and its treatment.

Complications Etiology
Second solid tumors Genetic susceptibility,20 lifestyle (smoking, drinking),21 radiation therapy,22 immunosuppression (stem cell transplant survivors)23,24
Myelodysplasia and acute myelogenous leukemia Chemotherapy, especially alkylating agents and topoisomerase II inhibitors25
Cardiovascular disease and accelerated atherosclerosis Anthracyclines, trastuzumab, taxanes, biological therapy, chest radiation, steroids, nilotinib, herceptin26,27
Lung disease Bleomycin, busulfan, chest radiation, stem cell transplantation26,28
Osteoporosis Myeloma, androgen deprivation, steroids, aromatase inhibitors, radiation, methotrexate29,30
Hypothyroidism, other endocrinopathies, and the metabolic syndrome Radiation, steroids, stem cell transplantation, androgen deprivation, alkylating agents, imatinib, thalidomide
Infertility Chemotherapy and radiation31
Bowel and bladder dysfunction Urinary and rectal surgery
Sexual dysfunction Surgery on prostate, rectum, vagina
Pain syndromes Surgery, such as thoracotomy
Psychosocial problems, including anxiety, depression, PTSD, suicide Cancer and cancer treatment32
Economic hardship Cancer treatment, disability, discrimination in employment and insurance33,34
Lymphedema Lymph node surgery and/or radiation
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PTSD = posttraumatic stress disorder.

In this article, we summarize the 6 tools for successful cancer survivorship care. We begin by reviewing the recommendations of the Institute of Medicine (IOM), the organization that first established the need for long-term care of cancer survivors, including the particular challenges faced by this fast-growing population of patients.

Reports from the Institute of Medicine

In 2005, the IOM seminal report, From Cancer Patient to Cancer Survivor: Lost in Transition, emphasized the significant inattention given to oncology patients after treatment regarding their higher morbidity and mortality.9 The IOM recommended establishing cancer survivorship as a chronic disease and developing a model for chronic care. It also stressed the need to address social, employment, financial, and health care access problems.

In 2008, the IOM report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, recommended that psychological distress should be monitored, documented, and treated at all stages of disease.7 Electronic tools, such as the National Comprehensive Cancer Network (NCCN) “Distress Thermometer,” are available to facilitate individual interviews.

Responses to the IOM Reports

The IOM reports were widely embraced by cancer patient groups and national professional societies. There is now a plethora of Internet-based guidelines for cancer survivor care. Within the VHA, an advisory group within the Cancer Care Collaborative is focusing attention on cancer survivorship. This group's products include survivorship resource guides for patients and families, and for clinicians.10 This structured, national, multidisciplinary process seeks to raise awareness of cancer survivorship and allows health care providers from multiple sites to share approaches related to delivering survivorship care.

The 6 Tools

The first tool in successful cancer survivorship care is a comprehensive treatment summary for every patient/survivor. This is followed by a cancer survivorship transition plan; delivering cancer survivorship care; accessing available guidelines for care; transforming cancer tumor registries to cancer survivor registries; and cancer survivorship research (Figure).

Figure.

Figure

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Six tools for cancer survivorship care.

#1. A comprehensive treatment summary for every cancer patient/survivor

A key survivorship tool is a comprehensive treatment summary for every single patient.11 Many patients do not know—or remember—what disease or drugs they have received. Many, if not most, of the primary care providers (PCPs) who perform most of the follow-up visits with cancer survivors also do not know what cancer treatments their patients received. Detailed lists of all drugs and radiation therapy including doses, frequencies, and complications, are required to determine the risks of specific long-term complications.

The Commission on Cancer (CoC) of the American College of Surgeons, which surveys and accredits cancer programs in the United States, proposed a new accreditation standard requiring cancer committees to phase in “a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment”.12 Approximately 40% of VA facilities are accredited by the CoC.

Fortunately the VHA can use its electronic medical record system to accomplish this goal with PCPs and, increasingly with patients through the personal health record, My HealtheVet. An electronic progress note entitled “treatment summary” can be created and regularly updated by the oncologist. This procedure is already in practice at the Central Arkansas VA Health Care System. These notes are immediately available to PCPs and to others who may be caring for the patient. They also may be printed so that the veteran can be fully informed and can collaborate in the design and implementation of his/her own care. When the patient transitions from oncology care to other care providers, the note is available as a final summary that can be amended further by other team members.

#2. A cancer survivorship transition plan

A cancer survivorship transition plan is required for appropriate transition from oncology to other providers.9 A transition plan includes recommendations for screening, surveillance, and referral for treatment of long-term adverse effects. Referrals for treating long-term adverse effects are the most problematic recommendation, because few evidence-based guidelines exist for how to care for complications. For example, while controlled trials suggest that exercise, psychoeducational interventions, and cognitive-behavioral therapy for insomnia are effective in treating cancer-related fatigue,13 there are no uniform algorithms for evaluation and treatment. Further study is needed to better understand the best approaches for addressing the wide range of long-term adverse effects of cancer treatment within the veteran population.

The transition plan should include wellness, with an emphasis on tobacco cessation, healthy diet, exercise, and stress management.14 Referrals for physical rehabilitation, fertility treatment, sexual health care, behavioral health care, nutrition, and genetic testing should be guided by the patient's concerns. Social workers can assist with issues relating to insurance coverage and retraining/reentering the workforce. Support for navigating through numerous written and online resources should be available. This may be especially important for patients who have low computer literacy and low numeracy, which are common among veterans.

#3. Delivering cancer survivorship care

Cancer survivors need to know how their cancer survivor needs will be fulfilled. This includes how they will be met (guidelines) and who is responsible for meeting them (clinics and providers). A common clinical practice is to discharge cancer patients from their oncology clinic after 5 years of complete, continuous remission. Yet, observational data from SEER-Medicare suggests that approximately 30% of breast cancer survivors,15 and more than 50% of colorectal cancer survivors,16 do not see an oncologist 1 or more years after diagnosis.

Many diverse models for cancer survivorship clinics are available.17 Commonly discussed models include a nurse-led system, a nurse practitioner-led clinic, an oncologist-led clinic, a multidisciplinary clinic, or a shared care model. The shared care model includes substantial involvement from primary care. All have advantages and disadvantages.

The VHA offers the potential for shared care through the Patient Aligned Care Team (PACT). The PACT is based on a shared care model in which PCPs manage cancer survivors with oncologists and other sub-specialists who actively participate in the real-time management of patients.18 In this model, the oncologist could provide actively updated recommendations and respond to queries with the help of clinical decision support tools. Additional training in cancer survivorship is needed to prepare all members of the health care team in meeting the needs of cancer survivors.7

#4. Accessing available guidelines for care

Numerous guidelines are available on various Web sites to facilitate cancer survivorship care (Table 2). These Web sites include survivorship care plan models, information on long-term complications, and resources that are specific to dealing with particular types of cancer, such as lung cancer and colorectal cancer.

Table 2. Selected national societies with cancer survivorship guidelines and resources.

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#5. Transforming cancer tumor registries into cancer survivor registries

There are many more cancer survivors than cancer patients in active treatment, and this number is growing rapidly. Cancer tumor registries are outstanding information resources, because they provide details about the disease, initial treatment, staging, and prognosis.

One potential function of the tumor registries is a greater emphasis on data collection related to long-term outcomes and follow-up, as well as more timely feedback loops to provide real-time information about the quality of care. Such an enhanced registry could transform the tumor registry from a cancer patient database to a cancer survivor database, from a retrospective tool to a prospective tool for quality improvement. Because VA tumor registries at individual medical centers provide information to the VA Central Cancer Registry, the national registry is filled with important information that is vital in defining populations for cancer survivorship research studies.

#6. Cancer survivorship research

Research on cancer survivorship is desperately needed, and sufficient numbers of long-term survivors are available to make large studies possible. Most studies of cancer survivors have focused on breast, prostate, and blood cancers. There is little research on survivors of other types of cancer or, specifically, on survivors who are veterans. The VA's strength in integrated care and system innovation provides unique research opportunities.19 Oncologists, PCPs, and allied health care team members can develop, implement, evaluate, and disseminate innovative cancer survivorship care interventions, as suggested by veteran-specific research. As health care providers within the VA system, we must petition our leaders to provide funding for such research.

Conclusions

The concept of cancer survivorship as a specific phase of cancer is relatively new. At the present time, cancer survivorship may be the longest phase of the disease under most circumstances. Cancer treatment summaries, cancer survivorship transition plans, and targeted survivorship care models are needed to improve cancer survivorship care, all of which may be supported by available guidelines. The translation of cancer tumor registries to cancer survivorship registries, combined with veteran-focused cancer survivorship research, will provide for enhanced long-term tracking and clinical innovations. The sufficient numbers of cancer survivors—almost 12 million nationally and 500,000 within VHA, representing 5% of the overall and VHA population,1,2—justifies implementing a comprehensive cancer survivorship program within the VHA.

It is important to remember that the end of cancer treatment is not the end of the cancer experience. Rather, cancer is a chronic disease that requires sustained and informed attention throughout the course of the illness. This attention is imperative in order to improve quality of life from the time patients receive a cancer diagnosis to the time they complete treatment.

Fast Facts….

  • Cancer survivorship is increasing
    • Almost 12 million cancer survivors in the United States
    • 500,000 in the VHA who are more likely male and older
  • Long-term complications that relate to underlying cancer and treatment include:
    • Second solid tumors
    • Cardiovascular disease and accelerated atherosclerosis
    • Long-term organ damage (lung disease, osteoporosis, bowel and bladder dysfunction, etc)
    • Endocrine abnormalities, metabolic syndrome, and osteoporosis
    • Infertility
    • Pain, lymphedema
    • Posttraumatic stress disorder, depression, anxiety
    • Cognitive impairment
  • Problems found in cancer survivorship include:
    • Economic hardship and/or discrimination in employment and insurance
    • Inadequate follow-up after leaving oncology for primary care
    • Psychosocial health care needs not met
  • Tools for innovating care include:
    • Comprehensive treatment summaries–Commission on Cancer recommendation in 2012
    • Cancer survivorship transition plans that contain guidelines for going through the process
    • Treatment of complications
    • Screening and surveillance
    • Wellness programs (tobacco cessation, healthy diet, exercise, stress management)
    • Referrals for emotional and social problems
    • Approaches to cancer survivorship care that are well-organized and contain guidelines for going through the process
    • Tumor registries that transform into survivor registries
    • Research about cancer survivorship to improve the long-term outcome of cancer survivors

Acknowledgments

This material is the result of work supported with the resources and the use of the facilities at the VA medical centers of each author. The views expressed are those of the authors and not necessarily those of the VA.

Footnotes

Author disclosures: The authors report no actual or potential conflicts of interest with regard to this article.

Disclaimer: The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Quadrant HealthCom Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.

Contributor Information

Dr. Paulette Mehta, the Central Arkansas Veterans Healthcare System and professor at the University of Arkansas for Medical Sciences, both in Little Rock.

Dr. David A. Haggstrom, the VA Health Services Research and Development (HSR&D) Center of Excellence on Implementing Evidence-Based Practice, and assistant professor at the Indiana University School of Medicine, both in Indianapolis.

Dr. David M. Latini, Baylor College of Medicine and a research scientist at the VA HSR&D Center of Excellence at the Michael E. DeBakey VA Medical Center, both in Houston, Texas.

Ms. Ellen A. Ballard, the Cancer Center in the VA Loma Linda Veterans Healthcare System in California.

Dr. Jennifer Moye, the Department of Psychiatry at Harvard Medical School and director of the Geriatric Mental Health Clinic, Brockton Division, at the VA Boston Healthcare System, both in Boston, Massachusetts.

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