Marci Lee Nilsen, PhD, RN, CHPN
Advancements in diagnosis and treatment are improving outcomes for patients with cancer. As a result, more patients are living long after treatment ends, though an efficient algorithm for building the right size and style of care each will need remains elusive.
Over a decade has passed since the Institute of Medicine (IOM) recommended that all patients completing active treatment for cancer receive a survivorship care plan (SCP).1
Many models of survivorship care have since been introduced to address a range of approaches. These include survivorship programs housed in the oncology setting, those led by primary care physicians (PCPs), and multidisciplinary survivorships clinics.2
Also, variations of these models exist and overlap.
More recently, a risk-stratified approach was implemented in England, Northern Ireland, and Australia to help clinicians personalize care pathways.3
Regardless of the model or approach, for certain patients, survivorship care should address health promotion, care coordinations, and the prevention and mitigation of late- and long-term effects of cancer and its treatment, including cardiac toxicity, cognitive changes, and lingering anxiety and/or depression.
As clinicians care for a growing number of cancer survivors, the urgency to identify the most efficient and effective method of survivorship care planning increases. More research is needed to evaluate the impact of survivorship care on patient outcomes and quality of life and determine best practices for streamlining care. Nurses are positioned to influence the future of survivorship care by advocating for and participating in initiatives geared toward bettering care throughout the cancer trajectory—something that is currently difficult to navigate.
“I’m a nurse with a PhD, and I think the system is difficult to navigate,” says Marci Lee Nilsen, PhD, RN, CHPN, assistant professor of acute and tertiary care in the School of Nursing and assistant professor of otolaryngology in School of Medicine at the University of Pittsburgh in Pennsylvania. “It’s overwhelming for patients.”
SURVIVORSHIP CARE AND CARE PLANS
Survivorship is a distinct phase of living with cancer framed by completion of initial treatment and either recurrence, second cancer, or death.1
When patients require ongoing treatment, providers determine when entering survivorship care makes sense on a case-bycase basis. If patients step away for acute care treatment due to recurrence or second cancer, they return when treatment is once again complete. This journeying back and forth continues as needed. Although the IOM made clear in its 2006 report the importance of providing each patient with an SCP, studies have shown inconsistent implementation of the recommendation. 2 Even a quick review of the information identified for inclusion in SCPs underscores the value for patients and providers alike. Minimally, patients should receive details about tests and results; tumor characteristics; treatment start and stop dates; treatments, including response and toxicities; support services provided; contact information for institutions and providers; and care coordinator information.
Additionally, patients and PCPs should receive a written follow-up plan that summarizes the expected course of recovery and any ongoing therapy; recommended screening/testing/ exams, including schedule and provider; possible aftereffects of treatment, including symptoms; signs and symptoms of recurrence and new cancers; possible psychosocial effects; insurance and financial implications and assistance; lifestyle recommendations; genetic counseling (as appropriate); secondary prevention strategies; follow-up referrals; and information resources.1 Undoubtedly, the time and effort required to compile a comprehensive care plan can be burdensome, relative to the complexity of each patient’s situation and circumstances. Nonetheless, the SCP serves as an invaluable tool for clear, consistent communication, follow-through, and reference, particularly when all recommended information is covered. Improvements are needed to simplify the development of SCPs; remove identified barriers for implementation; and propose practical, actionable standards of practice. LATE AND
LONG-TERM EFFECTS OF CANCER
Cancer and its treatments take a toll on patients. Although a common (and feared) late effect is development of a recurrence or new cancer, other complications, such as cardiac toxicity— particularly for breast cancer survivors—and congestive heart failure, atherosclerotic disease, ischemia, hypertension, and myocardial depression, are serious and life-threatening.1 Adhering to recommendations for cardiac screening and monitoring for specific patient populations may mitigate the risk and severity of cardiac effects. Cognitive changes can be particularly frustrating for patients. Often referred to as chemo brain, they include impaired memory and decision making and difficulty concentrating.
Research is inconclusive regarding the root cause of cognitive deficiencies, but their impact on quality of life goals is wide-ranging and can lead to increased distress.1 Informing patients that they may experience difficulties in this area while not causing them undue alarm requires tactfulness and empathy.
Lingering anxiety and depression are not uncommon and should therefore be addressed. Interventions to prevent or minimize their severity begin with awareness and education and may include complementary measures such as aromatherapy and meditation or diet and nutritional modifications. Patients should not be caught off guard by anxiety or depression. Addressing the matter up front and early can help make their occurrence easier to identify and intercept.
The number of possible late and long-term effects of cancer and its treatment seems limitless. The least clinicians should do for their patients is have conversations about the most probable effects and provide as-needed education that is helpful yet not overwhelming.
MODELS OF SURVIVORSHIP CARE
Differences in care settings often influence or dictate the model of survivorship care. Perhaps the most important aspect involves who directs the care for cancer survivors. The most common yet least formal model begins with oncology-led care, transitioning to PCP-led care when deemed appropriate by the oncology team. Oncologist-led care is likely the least practical, considering that the number of patients living with cancer is estimated to increase from 16.9 million to over 22 million by the year 2030.3 Oncology practices will simply not be able to manage the workload of caring for new patients and patients in survivorship.
PCP-led care has its own limitations and concerns. PCPs are less familiar with the needs of post-treatment cancer patients than oncologists, so issues may arise that are either identified late or treated inappropriately. It’s easy to understand how survivorship care can quickly become complicated, especially when factoring in patient comorbidities such as diabetes, hypertension, obesity, and a host of other diseases. No consensus has been reached about who is best suited to manage the multiplicity of health issues that do or may occur during active treatment and survivorship. Survivorship clinics, which house many services in 1 location, are becoming more popular. Nilsen describes the University of Pittsburgh Medical Center (UPMC) Head & Neck Cancer Survivorship Clinic she helped develop and currently coordinates: Employing an integrative care model, the care team consists of a head and neck surgeon, an audiology assistant, a kinesiologist, a physical therapist, a dentist, and a medical consultant, all of whom provide services in 1 clinic. The workflow is patientcentric and begins with patient completion of a validated, reliable questionnaire to identify problems. Patients are then roomed and, because they are at higher risk of hearing loss, undergo a hearing screening. They will also have an audiogram, wax removal, or hearing aid repair (done at no charge), if indicated.
“If patients cannot hear you, then discussions with them will be problematic,” Nilsen says. While the audiologist works with the patient, the nurse reviews the paperwork. Nilsen then completes a treatment summary, so everyone has an overview of when the patient was treated, tumor site and stage, and type of treatment received. Next, the patient is screened for any swallowing or musculoskeletal problems. A patient who would benefit from physical therapy need not go elsewhere for treatment—the service is readily available at the survivorship clinic. Providing many services under 1 roof simplifies care coordination and helps ensure continuity of care.
Nilsen says the clinic’s success comes from its focus on the patient and collaboration of care, which help address many of the needs faced by head and neck cancer survivors. Some treatments, such as dental care (for which patients may not have insurance coverage), are paid for through grants and fund-raising efforts. Creative problem solving helps make sure patient needs are met.
Other benefits of survivorship clinic models are coordination of care and availability of so many services in 1 place, Nilsen says. This model minimizes the difficulty of navigating a complex healthcare system.
A crucial component, according to Nilsen: communication, particularly in survivorship care. Everyone involved with the patient must have open lines of communication. “It’s important to bring up the issue of survivorship care early,” Nilsen says. “There are so many issues with head and neck cancer. It’s best for patients to be informed, not surprised.”
Although survivor clinics such as the UPMC model provide a convenient and invaluable option, not everyone has access to this type of care, nor is this model needed for all types of cancer, particularly those considered low risk. Another promising approach offering both flexibility and applicability for a range of patients and circumstances is the personalized risk-stratified pathways model.
Deborah Mayer, PhD, RN, AOCN, FAAN, Francis Fox Hill Distinguished Professor in the School of Nursing and director of survivorship at the Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill, is a recognized champion of cancer and oncology nursing. In 2015, she was awarded the Oncology Nursing Society’s Lifetime Achievement Award for her many contributions to the field. Mayer is a proponent of risk-stratified survivorship care, which begins with differentiating survivors in high-volume groups from those in high-risk groups. She acknowledges that data are missing to recommend who fits the kind of survivorship care they need: “We need a risk-stratified approach because we can’t be all things to all people.” That may be hard for clinicians to hear, but it makes sense.
Mayer says that patients with breast, prostate, and colorectal cancers (high volume) are likely to do relatively well following treatment, whereas those with head and neck cancers (high risk) will likely face a myriad of late and longterm effects unique to this patient population.
Adult survivors of pediatric cancers fall into yet another category. These patients are susceptible to being lost in care as their focus shifts toward college or career goals and away from cancer, even as physical and psychosocial effects remain cause for concern.1
Categorizing patients by volume and risk can help providers simplify the care management process while ensuring patients receive needed services and support. This model makes financial sense by improving patient outcomes and controlling cost. Studies conducted after the model was piloted in the United Kingdom showed that 50% to 80% of survivors in the highest- volume group (colorectal, breast, and prostate) were able to self-manage care after treatment.4
The basic premise of the model consists of triaging patients according to need and type of provider involvement, or right-sizing care. “If a patient is 20 years out from breast cancer, there is no reason to come to a cancer clinic for follow-up, yet many of them do,” Mayer says. “It’s also emotionally rewarding for the oncologist to see someone is doing well,” Mayer pointed out. Again, flexible, patientfocused care is possible, but the business-asusual model would need to change for this to happen efficiently.
THE NEW NORMAL
Without question, cancer changes everything. Patients who receive cancer diagnoses will face acclimating to and accepting survivorship care as another facet of what will become their new normal. Clinicians who competently guide patients into and through this phase of care ease the burden.
Although it may come as a surprise to many, Mayer says she believes survivorship care is not new. “There’s nothing special about survivorship care,” she says. “It’s been labeled, but it’s follow-up care. It’s what we’ve been doing all along.”
- Hewitt M, Greenﬁeld S, Stovall E, eds; Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006.
- Powel LL, Seibert SM. Cancer survivorship, models, and care plans. Nurs Clin N Am. 2017;52(1):193-209. doi: 10.1016/j.cnur.2016.11.002.
- American Cancer Society. Cancer treatment & survivorship facts & figures 2019-2021. cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-treatment-and-survivorship-facts-and-figures/cancer-treatment-and-survivorship-facts-and-figures-2019-2021.pdf. Published 2019. Accessed July 10, 2019.
- Mayer DK, Alfano CM. personalized risk-stratified cancer follow-up care: its potential for healthier survivors, happier clinicians, and lower cost. J Natl Cancer Inst. 2019;111(5):442-448. doi: 10.1093/jnci/djy232.