Survivorship Care: Essential Components and Models of Delivery
Survivorship Care: Essential Components and Models of Delivery
When caring for patients with a new cancer diagnosis, oncology nurses generally have clear and distinct plans to assist each patient through the phases of diagnosis and treatment. Nurses provide guidance, support, and well-defined patient education regarding the planned treatment, as well as anticipatory guidance regarding management of side effects and emotional responses to diagnosis and treatment. Nurses see each patient through his or her phases of treatment, whether it involves chemotherapy, surgery, radiation, biotherapy, hematopoietic cell transplant, or a combination of modalities, assisting and problem-solving with patients and their families along the way.
Frequent contact with the healthcare system during treatment is the norm, and patients often feel that things are “under control” because they are receiving active treatment directed at their cancer. Once treatment ends, however, patients are often at a loss in coping with the next phase of their life—survivorship—and nurses often lack the resources necessary to guide their patients through this critical phase of cancer care. It is at this juncture that many patients feel “lost in transition” and some describe feeling “abandoned” by the healthcare system. Fortunately, resources are now being developed to assist nurses and other healthcare professionals in providing much-needed follow-up care for cancer survivors.
Cancer Survivors: Who Are They?
Treatment for cancer has improved tremendously over the past several decades. In the United States today, 66% of adults and 80% of children diagnosed with cancer will survive 5 years, and the current population of cancer survivors now exceeds 11 million. Breast cancer survivors are the most numerous, representing 24% of all cancer survivors, followed by prostate (20%), colorectal (10%), gynecologic (9%), hematologic (8%), urinary tract (7%), melanoma (7%), and thyroid (4%) malignancies (see Figure 1, p. 48). Cancer survivors also represent an aging population; 60% of cancer survivors are over the age of 65 (see Figure 2, p. 49). This ever-expanding population of cancer survivors is a credit to the success of research aimed at improving cancer treatment and supportive care; however, patients are emerging from that treatment with varied and often complex survivorship needs. As Dr. Julia Rowland, Director of the National Cancer Institute’s Office of Cancer Survivorship, has pointed out, “Being cancer-free does not mean being free of cancer’s effects.”
Cancer Survivorship: A Distinct Phase of Cancer Care
Although there are several variations defining when the phase of cancer survivorship begins—including the moment of diagnosis, completion of acute therapy, and living 5 years beyond diagnosis—for the purposes of this discussion, we will focus on the definition used by the Institute of Medicine (IOM) in its seminal report released in 2006 entitled “From Cancer Patient to Cancer Survivor: Lost in Transition.” In this report, the IOM defined cancer survivorship as the “phase of care that follows primary treatment.”
It is at the time of therapy completion that patients often experience a loss of the strong “connection” to their care team that sustained them through treatment. No longer returning regularly for treatment appointments, survivors often lack a concrete plan for follow-up and may be at a loss regarding whom to turn to for assistance in managing physical symptoms, emotional distress, and economic issues that often arise during the survivorship phase.
Many cancer survivors explain that reaching the end of therapy is a landmark on which they have set their sights throughout therapy—with a much-anticipated goal of “getting back to normal.” Yet, when the important end-of-therapy milestone is reached, survivors are often surprised that instead of experiencing celebration and relief, they instead find themselves coping with uncertainty and feelings of abandonment. With active treatment over, anxiety regarding the possibility of cancer recurrence often emerges. Many also discover that what they previously conceived of as “normal” no longer exists. Cancer has forever changed them, and they find that they must adapt to the “new normal” that living with the consequences of cancer and its therapy requires.
The Cancer Control Continuum has been employed by the National Cancer Institute since the 1970s to define the phases of cancer care, including prevention, early detection, diagnosis, treatment, and end-of-life. Survivorship is now recognized as a phase along this continuum, taking its place at the end of primary treatment, and encompassing the domains of psychosocial coping, surveillance, long-term follow-up, management of late effects, and health promotion. The necessity of providing specialized care to meet the unique needs of patients during the survivorship phase of the cancer care continuum is therefore clear. Nurses are in a unique position to take the lead in defining survivorship care—because of nursing’s focus on health promotion and supportive care, and because nurses typically are in the position of assisting patients in managing sequelae such as pain and other symptoms that often occur following treatment.[9,10]
A diagnosis of cancer forever changes the life of a patient, shakes him or her to the very core. Treatment is often toxic, placing survivors at risk for treatment-related sequelae. Consequences of cancer and its therapy may be psychological, including fatigue, anxiety, depression, sexual problems, and learning to live with the awareness of having faced and survived a life-threatening illness. Psychological challenges faced by survivors after cancer treatment have been reviewed in ONCOLOGY Nurse Edition’s survivorship series by Recklitis, Sanchez-Varela, and Bober. Social challenges (eg, economic hardships, workplace discrimination, problems with interpersonal relationships) are also commonly faced by cancer survivors and have been reviewed by Hara and Blum.
Consequences of cancer therapy also generally involve physical changes. These physical changes may be related to the long-term effects of cancer and its treatment (such as disfigurement and difficulties with speech and swallowing resulting from surgery and/or radiation for head and neck cancer) and may require an extensive period of rehabilitation and adaptation on the part of the survivor. Physical changes may also occur in the form of late-onset complications of cancer therapy, such as congestive heart failure occurring as a late consequence of anthracycline chemotherapy for treatment of breast cancer.
While psychosocial challenges faced by survivors often cut across diagnoses and treatment types, physical changes are linked with treatments; therefore, complications are often unique to the specific treatment that each survivor received for his or her particular type of cancer. Ongoing awareness of and surveillance for these potential problems is required in order to identify and treat these physical complications at an early stage, when interventions are most likely to be effective.[13,14] The late physical complications of treatment in adult cancer survivors have been reviewed in this series by Stricker and Jacobs.