The Importance of Cancer Survivorship Care Plans: A Nurse’s Perspective

Fifth Issue 2013 series: Conquering the Cancer Care Continuum - Supplements
Beth Faiman, PhD, APRN-BC, AOCN
Editor in Chief

Question:
Which of these patients would benefit from a cancer survivorship care plan (SCP)?

  1. Evan is a 28-year-old male who was diagnosed with testicular cancer 6 years ago. He underwent surgery and chemotherapy and has no evidence of disease. He plans to get married next year but wonders what the chemo “has done to my body,” and if he will ever be able to have children “normally.”
  2. Patricia is a 72-year-old female diagnosed with breast cancer 3 years ago. She is currently undergoing radiation to a new metastatic lesion in her left hip. She is recently widowed.
  3. Mary is a 52-year-old female diagnosed with B-cell, non-Hodgkin lymphoma last year. She achieved a complete response and is seen every 3 months. She just lost her job as a waitress.
  4. Andy is a 68-year-old male diagnosed with multiple myeloma in 2003. He has been on multiple chemotherapy regimens and achieved a partial remission to treatment. He remains on continuous oral chemotherapy and lives alone.
  5. All of the above.

Answer:
All of the above.

The Importance of Cancer Survivorship Programs
Cancer remains the second leading cause of death in the United States, and the American Cancer Society estimates there are approximately 13.7 million cancer survivors in the United States, with 18 million projected by 2022.1,2 According to the National Cancer Institute, cancer survivorship covers the physical, psychosocial, and economic issues of cancer from diagnosis to the end of life, which encompass the true “costs” of cancer.3 Interest into the underlying concepts of survivorship has increased tremendously in the past decade as patients are living longer than ever. In the growing population of cancer survivors, many are burdened by a host of challenges as a consequence of survival. Thus, cancer survivorship is a major public health concern, as a multitude of factors can negatively impact the patient’s family, friends, and community.4-6

Although several definitions exist, a cancer survivor is defined as an individual with a cancer diagnosis who must deal with the sequelae of the cancer itself and the effects of the treatment.7 Side effects of cancer and its therapy can be short-term or long-term and are not always in the physical domain. Short-term effects may include a temporary disability or change in living situation. Long-term effects can be physical, such as chronic graft-versus-host disease, development of heart disease secondary to cardiotoxic chemotherapy, or inability to pay the mortgage. Issues that cancer survivors deal with are mostly unique to cancer, but similarities are seen in patients with end-stage renal disease who are on dialysis, or in organ transplant recipients. Nurses and providers must be aware of these issues and open discussion when appropriate and ensure follow-up surveillance for long-term complications.

Physical health status and the prevention of long-term complications are important components of cancer survivorship. Cancer patients are at a higher risk of developing preventable illnesses and experience a poorer health status than noncancer patients. A large cohort study of 2522 cancer and noncancer patients evaluated the incidence of noncancer health-related problems, self-reported health condition, and ability to carry out activities of daily living. Individuals with cancer were more likely to develop cardiovascular disease, endocrine disease, or diabetes than noncancer patients, and they were also more likely than other age- and gender-matched individuals to report poor health status.8 This study illustrates that patients with cancer are vulnerable to health conditions that can negatively impact quality of life and emphasizes the importance of preventive health maintenance (HM) screening.

Preventive HM is an important aspect of care in all patients, and it is especially critical to cancer survivorship. HM encompasses procedures that aim to prevent illness, maintain maximum function, and improve the health of the individual. Recommendations for HM screening are made by the World Health Organization and agencies such as the US Preventive Services Task Force (USPSTF), a branch of the Department of Health and Human Services. The USPSTF has issued guidelines for primary and secondary preventive services in all persons based on age, sex, and risk factors for disease. Although patients with cancer are at the same or increased risk for illness due to concurrent medications used to treat or manage their cancer, cancer patients fail to participate in routine HM screening.9 Encouraging weight loss, a healthy diet, and smoking cessation are HM practices that cancer patients can benefit from.

Barriers to adequate HM and follow-up care after the initial cancer treatment exist. A major reason for insufficient HM in cancer patients is based on erroneous patient and provider beliefs. Surveillance and screening for primary and secondary health conditions in patients with an existing cancer diagnosis has been viewed by some providers and patients as unnecessary because the life expectancy is already shortened by the cancer. Lack of provider knowledge of appropriate screening and the unique needs of cancer survivors remains an issue despite evidence of improved cancer survival. Further, patients themselves are unclear as to what treatments they received for their cancer or their specialized needs following cancer treatment.10

Psychological, social, and financial issues are prevalent in cancer patients. Fear of cancer recurrence, loss of employment, loss of medical insurance, and physical impairment are commonly cited fears of cancer survivors. A multidisciplinary team of specialists that includes psychiatry, social work, and rehabilitation specialists is necessary to appropriately address the unique needs of the cancer survivor and the family. Regardless of the cancer stage at diagnosis, all cancer patients can benefit from a well-designed cancer survivorship program.7,10,11

A Call for Action
Major organizations have recognized the need to improve the quality and consistency of care provided to cancer survivors. In 2004, A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies was developed by the Centers for Disease Control and Prevention (CDC) in alliance with the Lance Armstrong Foundation. The Institute of Medicine (IOM) recognized the specialized needs of cancer survivors in a 2005 report.12 The goal of these papers was to identify the needs of cancer survivors, ensure all survivors have appropriate care and resources, and implement methodology for improved health-related outcomes.5,10

Survivorship programs have grown tremendously in recent years since the CDC and IOM reports. Major organizations such as the American Society of Clinical Oncology, the National Comprehensive Cancer Network, the Commission on Cancer, and the Oncology Nursing Society are just a few of the groups that have placed an emphasis on developing programs to meet the patients’ needs. Major hospital systems have cancer survivorship programs either in existence or in development. These structured care models address the aforementioned components of survivorship and SCP development.

SCPs are individualized plans of care that can be presented to cancer patients during or after completion of treatment. Many variations of the SCP exist and are tailored toward each patient group, such as the care plan created by the International Myeloma Foundation Nurse Leadership Board for patients with multiple myeloma.12 A tool for SCP building can be found at http://journeyforward.org/professionals/survivorship-care-plan-builder. This resource allows providers to develop an SCP for cancer patients, their primary care physician, and other members of the treatment team.

Each of the patients listed in scenarios at the beginning of this article would benefit from an SCP created by the nurse or healthcare provider. Whether the patient is a young male who received chemotherapy for testicular cancer or an older female with lymphoma, the SCP addresses the specific needs of each patient. A team-based approach to care with primary providers, oncology physicians, nurses, pharmacists, social workers, physical therapists, and nutritionists provides resources essential to the well-being of the patient.

Nurses and healthcare providers are in a position to promote the importance of HM and survivorship programs to cancer survivors by educating themselves and others. Patient education about the improved survival, the chronicity of cancer, and the risk of secondary conditions should begin as soon as relevant in the treatment continuum. Providers should remind the patient that monitoring of the cancer itself and other illnesses must be ongoing. As patients with cancer are living longer than ever, nurses and healthcare providers will continue to play a key role in the early diagnosis and prevention of noncancer-related illness in patients with cancer, in explaining the benefits of survivorship programs, and in facilitating referrals.

Conclusion
Cancer is a chronic disease in the United States. Most cancers are incurable but treatable. In this growing cancer population, improved survival comes with physical, financial, and emotional costs. Survivorship programs continue to grow to address the unique needs of cancer patients. Nurses and healthcare providers can effectively create a personalized SCP for each patient that focuses on the importance of HM and continued follow-up cancer care. Screening for health conditions or cancer secondary to treatment is critical, as research suggests that patients with cancer have the same or increased risk of developing illness as other patients without cancer. Knowledge of modifiable risk factors such as smoking cessation and a healthy diet can lead to decreased noncancer-related morbidity. Healthcare providers play an important role in providing education about the importance of HM and in partnering with PCPs.

References

  1. American Cancer Society. Cancer Facts & Figures 2013. Atlanta, GA: American Cancer Society; 2013.
  2. de Moor JS, Mariotto AB, Parry C, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomarkers Prev. 2013;22:561-570.
  3. National Cancer Institute. Cancer Trends Progress Report – 2011/2012 Update. http://progressreport.cancer.gov. Accessed July 10, 2013.
  4. Carpenter WR, Yeh WS, Wobker SE, et al. Getting cancer prevalence right: using state cancer registry data to estimate cancer survivors. Cancer Causes Control. 2011;22:765-773.
  5. Centers for Disease Control and Prevention. A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Atlanta, GA: Centers for Disease Control and Prevention; April 2004.
  6. Smith JL, Pollack LA, Rodriguez JL, et al. Assessment of the status of A National Action Plan for Cancer Survivorship in the USA [published online ahead of print April 23, 2013]. J Cancer Surviv.
  7. McCabe MS, Faithfull S, Makin W, et al. Survivorship programs and care planning. Cancer. 2013;119:2179-2186.
  8. Gallicchio L, Kalesan B, Hoffman SC, et al. Non-cancer adverse health conditions and perceived health and function among cancer survivors participating in a community-based cohort study in Washington County, Maryland. J Cancer Surviv. 2008;2:12-19.
  9. US Preventive Services Task Force. www.uspreventiveservicestaskforce.org/. Accessed July 10, 2013.
  10. Casillas J, Syrjala KL, Ganz PA, et al. How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network. J Cancer Surviv. 2011;5:371-381.
  11. Bilotti E, Faiman BM, Richards TA, et al. Survivorship care guidelines for patients living with multiple myeloma: consensus statements of the International Myeloma Foundation Nurse Leadership Board. Clin J Oncol Nurs. 2011;15(suppl):5-8.
  12. Institute of Medicine. Published April 28, 2010. www.iom.edu. Accessed July 10, 2013.
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Last modified: May 21, 2015