Highlights from Best Practices in Lung Cancer Navigation Summit
The role of nurse navigators has grown exponentially in recent years, and is now regarded as an integral element of oncology treatment and patient care. The Academy of Oncology Nurse & Patient Navigators (AONN+) defines patient navigation as the “process whereby a patient is given individualized support across the continuum of care, beginning with community outreach to raise awareness and perform cancer screening, through the diagnosis and treatment process, and on to short- and long-term survivorship or end of life.”1 At the Best Practices in Lung Cancer Navigation Summit, held October 22, 2016, in Rosemont, IL, oncology nurse navigators involved in the care of patients with lung cancer convened to discuss the complexities and role of nurse navigators in the treatment of lung cancer. This monograph summarizes the meeting proceedings with discussion points, including the following: current treatment landscape for lung cancer, evolving role of immunotherapy in lung cancer, challenges in lung cancer treatment, lung cancer screening and outreach programs, patient care coordination and referrals, communication of goals and treatment plans, patient counseling on palliative care, and survivorship care plans.
Understanding the Complexities of Existing Treatment Options for Patients with NSCLC
Lung cancer is the leading cause of cancer-related mortality in the United States, accounting for 27% of all cancer deaths.2 The majority of lung cancer patients are diagnosed at an advanced stage of disease; from 2005 to 2011, 57% of patients diagnosed with lung and bronchus cancer had disease that had spread to distant parts of the body, and the 5-year survival rate for these patients was 4.2%.3 Early-stage disease for patients with non–small-cell lung cancer (NSCLC), a histologic subtype that constitutes about 85% of lung cancers, is potentially curable with surgical interventions, while chemoradiation offers the possibility of cure in a fraction of locally advanced disease. However, treatment options are limited for advanced disease stages, with platinum-based chemotherapy regarded as the cornerstone of first-line treatment for the majority of patients with NSCLC.
At the turn of the millennium, better understanding of the pathogenesis of cancer led to significant advancements in the identification and development of targeted therapeutic agents that could also be combined with chemotherapy to further improve outcomes. Bevacizumab, a monoclonal antibody directed against the proangiogenic factor vascular endothelial growth factor (VEGF), is approved in combination with doublet chemotherapy for patients with nonsquamous NSCLC without a recent history of hemoptysis; however, it showed only a modest overall survival (OS) improvement of 2 months versus chemotherapy alone.4 Ramucirumab, another VEGF receptor antibody, is also now approved as second-line treatment for both squamous and nonsquamous NSCLC in combination with docetaxel, based on demonstrated improvements in progression-free survival (PFS) and median OS.5,6
From a histologic and molecular perspective, our understanding of NSCLC has evolved significantly from being viewed as a homogeneous single disease to identification of various subtypes (eg, adenocarcinoma, squamous), exhibiting distinct genetic and molecular features (eg, EGFR, ALK, and ROS1) that allow for more effective and targeted treatments. Simultaneously, several predictive and prognostic biomarkers have also emerged to guide treatment selection. At the present time, targeted treatments informed by histology and biomarkers have expanded treatment options for NSCLC, with special consideration given to oncogene involvement, epithelial tissue type (squamous vs nonsquamous), and line of treatment.
For molecularly defined patient subgroups that harbor EGFR-activating mutations, specific targeted agents such as the EGFR tyrosine kinase inhibitors (TKIs) erlotinib, gefitinib, and afatinib have improved treatment outcomes when administered with or without chemotherapy. Other approved TKIs include crizotinib that targets ALK, ROS1, and MET; ceritinib that targets ALK and insulin growth factor-1 receptor; and alectinib that targets ALK and RET.7 However, acquired resistance to these agents poses a considerable challenge; T790M mutation, which prevents the binding of erlotinib to EGFR through steric hindrance, is the predominant mechanism contributing to resistance against erlotinib. Osimertinib is a T790M-specific EGFR inhibitor that is approved for patients with metastatic EGFR T790M-positive NSCLC, as assessed by an FDA-approved test, who have progressed on or after EGFR therapy, based on demonstrations of higher overall response rate (61% vs 21%) and prolonged PFS (9.6 months vs 2.8 months) versus those without EGFR T790M mutations.8 Therefore, molecular and genetic testing is warranted in patients newly diagnosed with NSCLC to guide initial treatment decisions and during treatment to monitor for resistance.
Despite these advances, there is still need for more effective treatments since the molecularly targeted agents are restricted to only a small subset of patients and chemotherapy remains the cornerstone of therapy for the majority of patients. The emergence of immunotherapy with checkpoint inhibitors has ushered in a new era in the treatment of NSCLC due to its antitumor activity, broad applicability, and lower potential for development of resistance.
Immuno-Oncology: A New Era in NSCLC Therapy
The immune system is able to mount an antitumor response by recognizing and targeting cancer-specific molecules. Several pathways are involved in this activation and deactivation of the immune response; in particular, T-cell checkpoint pathways function to prevent overstimulation of the immune system.9 However, cancer cells are able to regulate and evade the immune system defenses by modulating immune checkpoint proteins such as CTLA-4 and PD-1. Therapeutically, inhibition of CTLA-4, PD-1, and its ligand (PD-L1) has allowed harnessing of the host immune system to kill tumor cells. Inhibition of PD-1 blocks its binding to the PD-1 receptor, blocking its interaction with its cognizant ligands PD-L1/L2, while inhibition of CTLA-4 disrupts its interaction with B7 protein, thereby preventing T-cell inactivation and enhancing antitumor activity.9
Several clinical trials have demonstrated the efficacy and safety of checkpoint inhibitors in lung cancer, including the anti–PD-1 inhibitors nivolumab and pembrolizumab and the PD-L1–blocking antibody atezolizumab, which resulted in their approval in different clinical settings. Results of the CheckMate-017 trial, which compared nivolumab with docetaxel in patients with advanced squamous NSCLC who had progressed on or after platinum-based chemotherapy, showed significant improvement in OS (9.2 vs 6 months; hazard ratio [HR], 0.59; P = .00025) and PFS (3.5 vs 2.8 months; HR, 0.62; P <.001), regardless of PD-L1 expression level.10 The CheckMate-017 trial also demonstrated a significant improvement in OS (12.2 vs 9.4 months; HR, 0.73; P <.002) compared with docetaxel in previously treated patients with nonsquamous NSCLC.11 The KEYNOTE-010 trial demonstrated that pembrolizumab as second-line therapy improved OS at doses of 2 mg/kg (10.5 vs 8.5 months; HR, 0.71; P = .0008) and 10 mg/kg (12.7 vs 8.5 months; HR, 0.61; P <.0001) in patients with PD-L1–positive advanced NSCLC of both squamous and nonsquamous histologies.12 In previously untreated advanced NSCLC with PD-L1 expression on at least 50% of tumor cells, pembrolizumab treatment was associated with significant prolongation of PFS (10.3 vs 6.0 months; HR, 0.50; P <.001) and OS (80% vs 72%; HR, 0.60; P = .005) compared with chemotherapy.13 A variety of tests are now available as companion diagnostics to test for PD-L1 expression.
Advantages of immunotherapy include a durable response that is associated with relatively few toxic side effects, while disadvantages can include low response rates or altered patterns of response and immune-related adverse events. Pseudoprogression has been associated with immunotherapy, and refers to increases in tumor size, development of new lesions, and an overall increase in the apparent total tumor burden, which can be challenging to interpret for clinicians and may result in switching of therapy.14 It is important to consider pseudoprogression particularly when there is an improvement in symptoms overall, prompting shorter intervals of scans, to assure that real progression is not missed. Overall, major pretreatment considerations include selection of appropriate patients (eg, those with low tumor burdens, good performance status, and PD-L1 status), assessment of a history of autoimmune disorders, chronic autoimmune suppression (as in transplant recipients), and end-organ damage.
Importantly, the adverse event profile and patterns observed with checkpoint inhibitors are distinct from those observed with conventional chemotherapy or biologic agents, underscoring the need for healthcare professionals and patients alike to become aware of these differences and their management. Several organ-specific immune-related adverse events (irAE) have been documented that are autoimmunelike/inflammatory in nature, including endocrinopathies, diarrhea/colitis, dermatitis, hepatitis, pneumonitis, and nephritis (Table 1).14,15 In particular, pneumonitis is of concern in patients with lung cancer. The severity and onset of irAEs are variable and may depend on the organ system affected and dose of drug; although the majority of irAEs are low grade, a few may be severe and life-threatening.14 Onset of irAEs typically occurs within the first treatment cycle, but many might occur after several months of treatment and even after treatment discontinuation.14 Therefore, successful management of irAEs warrants constant monitoring for potential select AEs; utilization of treatment algorithms; ongoing education of patients, family, and healthcare professionals; and referral to specialists, when needed.14 Standard treatment algorithms for irAEs include use of immunomodulating medications, including corticosteroids, antihistamines, and anti–tumor necrosis factor medications.15 For patients receiving steroid treatment for irAEs, steroids must be tapered off over at least 30 days15 to avoid a flare in toxicity; proton pump inhibitors, antimicrobial prophylaxis, and vitamin D and calcium supplementation are essential.
Role of the Navigator in Improving Patient Outcomes
In this evolving treatment landscape for NSCLC, the nurse navigator performs many key functions essential for the delivery of optimal patient care (Figure).16 According to the Oncology Nursing Society, one of the core competencies of the nurse navigator is to provide “appropriate and timely education to patients, families, and caregivers to facilitate understanding and support informed decision-making.”17 Accordingly, it is essential that nurse navigators educate patients, families, and caregivers on the diagnostic and staging process as well as current emerging treatment options available for lung cancer, and that they impart this complex information to patients in a format they will understand. These educational efforts must be individualized and cover disease-specific information such as a patient’s histology, clinical and/or pathologic stage, treatment plan, treatment goals, potential treatment-related side effects, as well as relevant health history, including comorbidities and current performance status. The role of each member of the multidisciplinary team involved in the diagnostic and treatment process must be clearly outlined. As key members of a multidisciplinary team, nurse navigators participate in case discussions, share perspectives on pressing clinical issues facing the patients, and contribute to treatment decision-making. Nurse navigators are in an ideal position to compile patients’ preferences for treatment and improve the decision-making process. Moreover, nurse navigators facilitate collaboration and communication among the various stakeholders along the cancer trajectory and ultimately enable patient care coordination. In addition, nurse navigators must provide “anticipatory guidance, education, and appropriate referrals to assist patients in coping with the diagnosis of cancer and its potential or expected outcomes.”17 During the cancer journey, regular communication with the patient is essential; delays in communication can add to a patient’s anxiety and worry. Overall, the goal of patient navigation is to ease patient anxiety and improve satisfaction, which not only significantly improves quality of life but can also improve disease outcome.17
The Navigator’s Role in Community Outreach: Teaching Prevention and Early Detection
In the most recent version of Cancer Program Standards: Ensuring Patient-Centered Care, published by the Commission on Cancer (CoC), Standard 4.1 requires that cancer programs “identify risk factors within their community and patient population and use strategies to modify attitudes and behaviors to reduce the change of developing cancer.”18 Community outreach efforts to educate the public on prevention and detection of lung cancer focus on smoking cessation and early lung cancer screening. Smoking is considered the single greatest preventable risk factor for lung cancer, with about 90% of cases caused by voluntary or involuntary cigarette smoking.7 Approximately 47.5 million adults use tobacco products, and approximately 70% of those want to quit, with nearly 45% attempting to quit annually.19 It is estimated that smoking cessation could reduce the number of annual cancer deaths in the United States by approximately 30%.20 A combination of pharmacotherapy and behavioral or cognitive counseling is regarded as the most effective means to improve abstinence rates.19
Unfortunately, smoking-cessation programs are not accessible to many individuals. It has been proposed that one way to proactively reach out to these individuals is by coordinating a smoking-cessation program with a community lung-screening program. Accordingly, under the Medicare program, the Centers for Medicare & Medicaid Services (CMS) allows preventive services, including lung cancer screening, counseling, and shared decision-making visits, and annual screening for lung cancer with low-dose computed tomography (LDCT) for appropriate beneficiaries. Eligibility criteria include persons who are 55 to 77 years of age with a 30 pack-year smoking history, who are currently smoking or who have quit within the past 15 years, and who have an absence of signs and symptoms of lung cancer.21 In addition, lung cancer screening, counseling, and shared decision-making visits include the following elements (appropriately documented in medical records): use of ≥1 decision aids to include benefits and harms of screening, follow-up diagnostic testing, overdiagnosis, false-positive rate, and total radiation exposure; counseling on the importance of adherence to annual lung cancer LDCT screening; impact of comorbidities and ability or willingness to undergo diagnosis and treatment; and counseling on the importance of maintaining cigarette smoking abstinence if a former smoker, or the importance of smoking cessation if a current smoker, and, if appropriate, furnishing information about tobacco-cessation interventions.21 However, the CMS screening is restricted to smoking exposure; it does not include the additional at-risk populations recommended for screening by the National Comprehensive Cancer Network (NCCN), such as those with radon and occupational exposure, family history of lung cancer in first-degree relatives, and disease history of chronic obstructive pulmonary disease or pulmonary fibrosis.22 In 2014, researchers published their protocol for development of a web-based shared decision-making tool to assist physicians and patients to make informed decisions about LDCT lung cancer screening.23
Despite these screening recommendations, a recent study revealed that many providers do not adopt these screening measures. Although 76% of the 101 physicians surveyed discussed the risks/benefits of screening, about 50% indicated that they made only 1 or no screening recommendations. Whereas nearly all physicians considered LDCT screening to be effective in detecting disease at earlier stages, the majority believed it was an unnecessary procedure, and about half thought it led to stress/anxiety and increased radiation exposure. Therefore, a major focus of current screening and outreach programs is to increase awareness of screening recommendations among providers, which can be mediated effectively by nurse navigators.24
Other elements of screening and outreach programs that nurse navigators can lead include reaching high-risk populations at Veterans Day events, visiting with primary care providers, setting up booths at health fairs, arranging coverage by local media, or joining the Shine a Light on Lung Cancer organization. In addition to supporting screening and outreach efforts through education, nurse navigators must address anxieties associated with any screening abnormality and ensure that screened individuals are followed up appropriately.
Addressing the Social Stigma of Lung Cancer: Counseling the Patient and Caregiver
In addition to the isolating definition of being a “cancer patient,” patients with lung cancer often face additional social stigma. The Oxford Living Dictionaries25 defines stigma as “a mark of disgrace associated with a particular circumstance, quality, or person,” whereas the Longman Dictionary of Contemporary English26 refers to it as “a strong feeling in society that being in a particular situation or having a particular illness is something to be ashamed of.” Lung cancer stigma characteristics are grounded on the smoking behavior of the patient; it is a social construct that results in moral judgment of the patient by themselves, family, the medical community, and society at large and holds them responsible for their condition. Four types of stigma have been identified: self-stigma, family and friend stigma, medical community stigma, and societal stigma. With self-stigma, patients primarily blame themselves, and feel guilt and regret for not quitting smoking, for being too weak to quit, and for not understanding the full addictive powers of nicotine. Some patients are so consumed with guilt and fear stigmatization to such an extent that they do not seek treatment or even refuse it. Loved ones, friends, and family may experience the stigma of lung cancer differently—some may commiserate and feel the social stigma of the disease, some may lash out in anger that the disease is taking their loved one from them, while others may further contribute to that stigma by blaming the patient for not quitting. In the medical community, overt statements are sometimes made about a patient’s history of smoking catching up to him or her or that insurance should not have to pay because the patients did this to themselves. Less overtly, physicians give less hope to lung cancer patients, often addressing end-of-life affairs before treatment even begins. Socially, often the first question people ask a patient with lung cancer is “How long did you smoke?”
Based on knowledge gained from other health conditions, such as HIV/AIDS and mental health diagnoses that are also associated with social stigma, there are several long-term, comprehensive solutions to change this stigma. First, survivability must be increased through early detection and treatment advances in targeted therapies. Second, to encourage individuals to seek treatment, disease perceptions must be challenged by informing the public that lung cancer is potentially treatable, is not necessarily a death sentence, and is not only about smoking. Third, public awareness must be raised to increase federal research funding and to make lung cancer a public health priority. Unlike other diseases, lung cancer lacks a celebrity spokesperson to shine a light on the issue, and those who have a connection with it prefer not to publicize it due to the associated stigma. Fourth, it is important to change the national conversation by educating and informing the public and challenging misconceptions. The Lung Cancer Alliance has worked diligently to bring about this change with a major public awareness campaign. Fifth, nihilism mediated by healthcare professionals needs to be eliminated through appropriate education by stressing the need for acceptance of smokers who develop lung cancer, creating an empathic environment, and training healthcare professionals on acceptable and unacceptable verbiage to use with patients with lung cancer. Sixth, survivors must be empowered to be the voice of the disease and taught to combat stigma. It is critical that smoking addiction is addressed and patients are educated on the harms associated with smoking and on the numerous cessation programs that exist. The stigma associated with lung cancer is multifaceted and deep-rooted, but it can be changed as we begin to shape the minds of the community to the truths of lung cancer. In this context, the role of the nurse navigator is to address the causes of stigma with care and sensitivity and influence outcomes by initiating these long-term, comprehensive solutions to change stigma.
Patient Care Coordination and Referrals
The increased complexity of cancer care requires effective coordination for optimal patient care across the cancer trajectory, including screening, diagnosis and treatment, and survivorship. Patient navigation is a model of care that is increasingly being applied in the context of the complex cancer care delivery landscape, and it is ideally suited for coordination of cancer care. As key members of a multidisciplinary team, nurse navigators coordinate care across multiple treatment modalities and care path transitions, facilitating collaboration among the various stakeholders and ancillary services, including radiologists, interventional radiologists, pulmonologists, interventional pulmonologists, pulmonary rehabilitation centers, thoracic surgeons, medical oncologists, radiation oncologists, pharmacists, and clinical trial research staff. Such collaborative efforts might be needed even before a positive pathologic diagnosis of cancer is made, with nurse navigators playing a critical role during the early diagnostic phase by coordinating psychosocial and educational support resources and addressing barriers to care based on the individual needs of patients (Figure).
Successful care coordination for navigators requires networking and relationship building. It is important to maintain and foster relationships with the collaborating providers so that they are aware of the potential role of navigation in the care of their patient. Equally important is the need to ensure that all potential referral sources are aware of patient navigation services and know how to initiate referrals, including primary care offices, emergency departments, urgent care centers, lung cancer screening clinics, pulmonary nodule clinics, and smoking-cessation programs.
As patient care coordinators, it is also imperative for nurse navigators to have a clear understanding and working knowledge of lung cancer staging and the diagnostic process so that newly referred patients may be triaged and referred to the appropriate provider. Such an understanding is also critical for effectively communicating the staging information to the patient and explaining how it dictates the course of treatment and referral process.
In addition to clinical care coordination, navigators are often required to assess the specific needs of a patient and provide referrals for several ancillary support services, which might encompass dietary and nutritional counseling, financial services, psychological counseling, transportation assistance, drug assistance programs, pulmonary rehabilitation services, support groups, and palliative or hospice care. Attesting to the integral role of nurse navigators in cancer care, the CoC now requires that cancer programs seeking to obtain accreditation have an established patient navigation component in place.18 There is evidence from real-world clinical practice settings that nurse navigators improve oncology care by improving overall satisfaction, reducing stress, and minimizing time to treatment initiation following diagnosis.27
Counseling the Patient and Caregiver on Palliative Care
Palliative care is a specialized care model designed for symptom management and preservation or restoration of quality of life in cancer patients. As opposed to hospice care, which refers specifically to care provided to patients with less than 6 months to live and prohibits the use of active anticancer treatments, palliative care is not restricted to the end of life and can be implemented at any disease stage, including while the patient is receiving anticancer therapy. Both care concepts share similar goals of using a team approach to manage disease symptoms, ease suffering, and improve quality of life for the patient. Both anticancer therapy and palliative care may be delivered in a variety of settings.
Although palliative care is appropriate at any disease stage, a misconception persists that it refers to end-of-life care and that it is not needed while undergoing active treatment with curative intent. Delivering palliative care early in the disease management process can improve quality of life and can assist with the transition into hospice care at end of life. The National Consensus Project for Quality Palliative Care and the NCCN Clinical Practice Guidelines in Oncology: Palliative Care are 2 important resources; the NCCN guidelines outline advance care planning, including recommended interventions and ongoing reassessment (Table 2).28,29
Advance care planning is a means to facilitate decision-making and promote better care at the end of life, which is a particularly traumatic and challenging phase in cancer care for patients, families, and healthcare professionals. Along with fulfilling the medical needs of patients, it is imperative that healthcare professionals also support them with end-of-life care. Early in the treatment process, healthcare professionals—particularly nurse navigators—must address anxiety, explore fears about dying, and engage patients in conversations about creating an advance directive or living will. Advance directives establish patient preferences for medical care at the end of life even if patients have lost their decision-making capacity. An advance directive that is accessible by all care providers defines the guidelines for subsequent treatment such as use of analgesics, antibiotics, and artificial respiration. This document not only allows patients to remain in control of their care but can also prevent strife among family members at a later disease stage. Unwanted, aggressive medical care will also be reduced. Conversations about end-of-life issues are often difficult for all concerned, and various communication strategies, including the SPIKES protocol, SOLER model, NURSE model, and the Ask-Tell-Ask model, may be adopted to assist with delivering information.
Survivorship Care Planning
With recent advances in cancer diagnosis and treatment, there is an increasing population of cancer survivors in all types of cancer. It is estimated that more than 15.5 million cancer survivors are alive in the United States, and this number is expected to increase to more than 20 million by 2026, underscoring the importance of survivorship care in this population.29 Based on these statistics, survivorship is increasingly being recognized as a distinct phase of the cancer trajectory that has significant medical, economic, and healthcare implications. According to the definition created by the National Coalition for Cancer Survivorship, an individual is considered a cancer survivor “from the time of diagnosis, through the balance of his or her life.”30
It must be noted that the 5-year survival rate for lung and bronchus cancer is largely dependent on disease stage at diagnosis.31 Despite the poor prognosis of many patients diagnosed at late stages of lung cancer, a survivorship care plan is the right of every patient. According to the National Institutes of Health, “In cancer, survivorship focuses on the health and life of a person with cancer posttreatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.”32 In the CoC’s Cancer Program Standards: Ensuring Patient-Centered Care, Standard 3.3 Survivorship Care Plan (SCP) requires that the cancer committee develop and implement a process to disseminate a treatment summary and follow-up plan to patients who have completed cancer treatment; the process must also be monitored and evaluated annually.18 The SCP is a record that describes and summarizes events that transpired during active cancer treatment, recommendations for follow-up care and surveillance testing/examinations, referrals for support services the patient may need going forward, and other information pertinent to the survivor’s short- and long-term survivorship care. The SCP is to be delivered to and discussed with the patient and recorded in the patient’s medical record within 1 year of cancer diagnosis but no later than 6 months following completion of active therapy; the timing of the delivery of the SCP may be extended to 18 months for patients receiving hormonal therapy. Patients presenting with stage 0 or stage IV disease are excluded or ineligible from the Standard 3.3 requirements despite meeting definitions of survivorship; however, individual institutions and programs may decide to provide SCPs for patients with late-stage cancer. Even so, fewer than half of the 245 oncology care providers surveyed across 14 sites reported ever providing a treatment summary to patients, and only 52% reported providing patients with any portion of an SCP.33
While the purpose of an SCP is to help improve the health and quality of life of patients following treatment, the posttreatment reality relating to quality of life is sobering. Poor health-related quality of life has been reported by approximately 25% of cancer survivors compared with about 10% of the adult population without cancer.34 Survivors are more likely to report fatigue,35 sexual problems,36 and lost productivity.37 Survivors are likely to be older, have multiple comorbidities, and need help with activities of daily living. They are also more likely to die from noncancer causes such as cardiovascular or respiratory diseases or to develop a second primary cancer, often associated with lifestyle comorbidities of smoking, drinking, obesity, or low physical activity.37,38
Cancer survivors may experience late and long-term effects related to the cancer itself and/or cancer treatment. Late effects refer to unrecognized toxicities absent or subclinical at the end of treatment and manifest at a later time. Long-term effects refer to side effects or complications arising during treatment and persisting after treatment completion; these include impaired organ function (bowel, bladder, lung), sexual dysfunction, infertility, cosmetic changes (ostomy), mobility limitations (dyspnea, stooling issues), as well as communication and cognitive issues.29 In addition, cancer survivors experience significant psychosocial distress, including anxiety and depression, fear of second cancers or health problems, body image issues, and difficulties in work and family life.35,39,40 At the end of treatment, survivors are plagued with several disturbing emotions: confusion about what the end of treatment entails, insecurity during the transition from active treatment to surveillance, vulnerability that the lack of treatment might make them susceptible to recurrences, and a sense of loss and abandonment from the lack of support from a treatment team.41 Recognizing the varied clinical and psychosocial effects on the patient, nurse navigators must educate and manage late and long-term effects preemptively, warn the patient of impending changes, manage surfacing anxieties, clarify newly defined roles, and be sensitive to the context of end of treatment.41
Four essential components of cancer survivorship care have been defined: (1) surveillance for cancer spread, recurrence, or second cancers, as well as assessment of medical and psychosocial late effects; (2) prevention of recurrent and new cancers, and of other late effects; (3) intervention for consequences of cancer and its treatment, including, but not limited to, medical problems, symptoms, psychological distress, and financial and social concerns; and (4) coordination between specialists and primary care providers to ensure that all of the survivor’s needs are met.42 In developing a care model, it is important to recognize that one size will not fit all; it is necessary to evaluate the clinical practice setting and logistics, provider preferences, available resources (eg, financial, personnel), the survivor population, and the implementation of timing. After regular feedback and communication during the development and implementation period, flexibility is key to reevaluating the effectiveness of the model once implemented.
Therefore, a well-constructed SCP must include (1) names of oncology care providers and relevant contact information; (2) detailed patient diagnosis and treatment summaries; (3) surveillance plan of scheduled follow-up clinic visits and tests, including disease-specific testing; and (4) wellness recommendations, including lifestyle factors and regular cancer screenings.43 However, barriers to developing SCPs include inadequate time during regular scheduled clinic visits, limited financial reimbursement, coordination challenges between oncologists and other involved practitioners, electronic health record shortcomings, role ambiguity among staff, and lack of intrastructure.43 Despite these obstacles, a systematic review of 10 studies (including 5 randomized controlled trials) reported high satisfaction among survivors with care plans without differences in objective measures of quality of life, oncologic outcomes, or perceived coordination of care.44 Even without measurable benefit, survivors may highly value a care plan during survivorship for easing the transition and helping them to adjust to a new “normal.”
The nurse/patient navigator is a critical member of the multidisciplinary oncology care team for patients with lung cancer. The navigator performs multiple functions in the cancer care delivery model, including screening and outreach activities; educating patients on treatment plans, goals, and side-effect management; addressing barriers to patient care; coordinating care; and assisting with transition of care across all aspects of the cancer care continuum, including screening, diagnosis, treatment, follow-up, survivorship, and end of life.
- Academy of Oncology Nurse & Patient Navigators (AONN+). Helpful definitions. www.aonnonline.org/about/helpful-definitions/. Accessed February 1, 2017.
- Siegel RL, Miller KD, Jemal A. Cancer statistics, 2017. CA Cancer J Clin. 2017;67:7-30.
- Howlader N, Noone A, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2013. National Cancer Institute. https://seer.cancer.gov/csr/1975_2013/. Accessed February 1, 2017.
- Sandler A, Gray R, Perry MC, et al. Paclitaxel-carboplatin alone or with bevacizumab for non–small-cell lung cancer. N Engl J Med. 2006;355:2542-2550.
- Perol M, Ciuleanu TE, Arrieta O, et al. REVEL: a randomized, double-blind, phase III study of docetaxel (DOC) and ramucirumab (RAM; IMC-1121B) versus DOC and placebo (PL) in the second-line treatment of stage IV non-small cell lung cancer (NSCLC) following disease progressing after one prior platinum-based therapy. J Clin Oncol. 2014(suppl):32. Abstract LBA8006.
- Garon EB, Ciuleanu TE, Arrieta O, et al. Ramucirumab plus docetaxel versus placebo plus docetaxel for second-line treatment of stage IV non-small-cell lung cancer after disease progression on platinum-based therapy (REVEL): a multicentre, double-blind, randomised phase 3 trial. Lancet. 2014;384:665-673.
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Non-Small Cell Lung Cancer. Version 5.2017. www.nccn.org/professionals/physician_gls/f_guidelines.asp. Accessed March 31, 2017.
- Jänne PA, Yang JC, Kim DW, et al. AZD9291 in EGFR inhibitor-resistant non–small-cell lung cancer. N Engl J Med. 2015;372:1689-1699.
- Schvartsman G, Ferrarotto R, Massarelli E. Checkpoint inhibitors in lung cancer: latest developments and clinical potential. Ther Adv Med Oncol. 2016;8:460-473.
- Brahmer J, Reckamp KL, Baas P, et al. Nivolumab versus docetaxel in advanced squamous-cell non–small-cell lung cancer. N Engl J Med. 2015;373:123-135.
- Borghaei H, Paz-Ares L, Horn L, et al. Nivolumab versus docetaxel in advanced nonsquamous non–small-cell lung cancer. N Engl J Med. 2015;373:1627-1639.
- Herbst RS, Baas P, Kim DW, et al. Pembrolizumab versus docetaxel for previously treated, PD-L1-positive, advanced non-small-cell lung cancer (KEYNOTE-010): a randomised controlled trial. Lancet. 2015;387:1540-1550.
- Reck M, Rodríguez-Abreu D, Robinson AG, et al. Pembrolizumab versus chemotherapy for PD-L1-positive non-small-cell lung cancer. N Engl J Med. 2016;375:1823-1833.
- Davies M. New modalities of cancer treatment for NSCLC: focus on immunotherapy. Cancer Manag Res. 2014;6:63-75.
- Naidoo J, Page DB, Li BT, et al. Toxicities of the anti-PD-1 and anti-PD-L1 immune checkpoint antibodies. Ann Oncol. 2015;26:2375-2391.
- Tariman JD, Szubski KL. The evolving role of the nurse during the cancer treatment decision-making process: a literature review. Clin J Oncol Nurs. 2015;19:548-556.
- Oncology Nursing Society. Oncology nurse navigator core competencies. 2013. www.ons.org/sites/default/files/ONNCompetencies_rev.pdf. Accessed January 31, 2017.
- Commission on Cancer. Cancer Program Standards: Ensuring Patient-Centered Care. 2016 edition. www.facs.org/quality-programs/cancer/coc/standards. Accessed January 26, 2017.
- Stack NM. Smoking cessation: an overview of treatment options with a focus on varenicline. Pharmacotherapy. 2007;27:1550-1557.
- Centers for Disease Control and Prevention. Cancer and tobacco use. www.cdc.gov/vitalsigns/cancerandtobacco/. Published November 2016. Accessed March 30, 2017.
- Centers for Medicare & Medicaid Services (CMS). Decision memo for screening for lung cancer with low dose computed tomography (LDCT) (CAG-00439N). www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=274. Accessed February 1, 2017.
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Lung Cancer Screening. Version 1.2017. www.nccn.org/professionals/physician_gls/f_guidelines.asp. Accessed March 31, 2017.
- Lau YK, Caverly TJ, Cherng ST, et al. Development and validation of a personalized, web-based decision aid for lung cancer screening using mixed methods: a study protocol. JMIR Res Protoc. 2014;3:e78.
- Ersek JL, Eberth JM, McDonnell KK, et al. Knowledge of, attitudes toward, and use of low-dose computed tomography for lung cancer screening among family physicians. Cancer. 2016;122:2324-2331.
- English Oxford Living Dictionaries website. https://en.oxforddictionaries.com/definition/stigma. Accessed January 26, 2017.
- Longman Dictionary of Contemporary English website. www.ldoceonline.com/dictionary/stigma. Accessed January 26, 2017.
- Case MAB. Oncology nurse navigator: ensuring safe passage. Clin J Oncol Nurs. 2011;15:33-40.
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Palliative Care. Version 1.2017. www.nccn.org/professionals/physician_gls/f_guidelines.asp. Accessed March 31, 2017.
- Miller KD, Siegel RL, Lin CC, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66:271-289.
- National Coalition for Cancer Survivorship. Our Mission. www.canceradvocacy.org/about-us/our-mission/. Accessed March 31, 2017.
- Cancer Stat Facts: Lung and Bronchus Cancer. National Cancer Institute. Surveillance, Epidemiology, and End Results. https://seer.cancer.gov/statfacts/html/lungb.html. Accessed March 31, 2017.
- National Cancer Institute. NCI Dictionary of Cancer Terms. www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=445089. Accessed March 18, 2016.
- Salz T, McCabe MS, Onstad EE, et al. Survivorship care plans: is there buy-in from community oncology providers? Cancer. 2014;120:722-730.
- Weaver KE, Forsythe LP, Reeve BB, et al. Mental and physical health-related quality of life among U.S. cancer survivors: population estimates from the 2010 National Health Interview Survey. Cancer Epidemiol Biomarkers Prev. 2012;21:2108-2117.
- Harrington CB, Hansen JA, Moskowitz M, et al. It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. Int J Psychiatry Med. 2010;40:163-181.
- Yabroff KR, Lawrence WF, Clauser S, et al. Burden of illness in cancer survivors: findings from a population-based national sample. J Natl Cancer Inst. 2004;96:1322-1330.
- Brown BW, Brauner C, Minnotte MC. Noncancer deaths in white adult cancer patients. J Natl Cancer Inst. 1993;85:979-987.
- Curtis RE, Freedman DM, Ron E, et al, eds. New Malignancies Among Cancer Survivors: SEER Cancer Registries, 1973-2000. https://seer.cancer.gov/archive/publications/mpmono/MPMonograph_complete.pdf. Accessed January 26, 2017.
- Baker F, Denniston M, Smith T, West MM. Adult cancer survivors: how are they faring? Cancer. 2005;104(11 suppl):2565-2576.
- Deimling GT, Bowman KF, Sterns S, et al. Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psychooncology. 2006;15:306-320.
- Thorne SE, Stajduhar KI. Patient perceptions of communications on the threshold of cancer survivorship: implications for provider responses. J Cancer Surviv. 2012;6:229-237.
- Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006. www.nap.edu/catalog/11468.
- Mayer DK, Nekhlyudov L, Snyder CF, et al. American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. J Clin Oncol. 2014;10:345-352.
- Brennan ME, Gormally JF, Butow P, et al. Survivorship care plans in cancer: a systematic review of care plan outcomes. Br J Cancer. 2014;111:1899-1908.