I’ve never met MMA, but I can tell one very important thing about her from the blog she wrote about adherence to therapy at home. MMA is not a “difficult” [ Read More ]
August 2013 VOL 4, NO 4
Current State of Care Transitions and Cancer Survivorship
Danelle Johnston, RN, BSN, OCN, CBCN
Introduction: A review of the literature was done to evaluate the current evidence regarding the barriers that influence the transition of care in cancer survivorship and impact patient quality of life (QOL) and health outcomes.
Methods: Scholarly articles and sources were searched to identify the barriers in cancer survivorship care. CINAHL, MEDLINE, PubMed, and Google Scholar were searched for the following terms: cancer survivorship, workforce shortage, cancer QOL, oncology nurse navigator, patient navigation, breast cancer survivors, cancer survivorship models of care, primary care providers, cancer care barriers to survivorship care, coordination of care, care transitions, and physician communication. The search was limited to articles in English from 2000 through 2012. The one recent exception was a landmark article on cancer survivorship model of care published in1985 that continues to have relevance and is recognized as the current model for cancer survivorship care.
Results: The literature identifies that the needs of cancer survivors are unmet and there are multiple barriers that impede the care of the survivor. Projected substantial growth in the number of cancer survivors and a significant deficit in oncology providers raises the question, how can the needs of the cancer survivor be met today and in the future?
Conclusions: Evidence-based strategies need to be developed by the oncology interdisciplinary team to overcome the obstacles that interfere with providing improved QOL and health outcomes. Quality survivorship care has gained national attention, and many healthcare organizations are hard at work identifying collaborative strategies to meet the growing needs of the cancer survivor and prevail over the barriers to providing quality survivorship care.
A review of the literature identified varying definitions of when a patient with cancer becomes a cancer survivor. Consensus defines a “survivor” as a person with cancer, from the time of diagnosis throughout his or her lifetime.1-5 Five-year cancer survival rates have been steadily rising, and various statistics have been reported, including an increase from 3 million survivors in 1971 to a projected 20 million by 2020.6,7 The American Cancer Society (ACS) projects 18 million cancer survivors by 2022,8 while the National Cancer Institute (NCI) estimates a 31% increase by 2020, which equals about 18.1 million survivors.9 This remarkable increase in cancer survivors can be attributed to the increased number of persons over the age of 65 years, earlier cancer detection, and improvements in technology and cancer therapies.10-14
Prior to 1985, there was little focus on cancer survivorship and many of the survivors’ needs went unaddressed.15 In 1985, Fitzhugh Mullan, a physician and cancer survivor, published an article that explored concepts of cancer survivorship that were subsequently adopted by the healthcare professional community as a model of practice.3 The National Coalition for Cancer Survivorship was founded in 1986 to heighten awareness and to address the unique needs of survivors, while empowering them to advocate for their needs.16 In 1996, the NCI established the Office of Cancer Survivorship (OCS). The OCS supports research to improve the quality of care that cancer survivors receive and to promote the education of healthcare professionals and survivors.15
Survivorship care continues to gain attention from the cancer community through the advocacy of organizations such as the Centers for Disease Control and Prevention (CDC) and the formerly named Lance Armstrong Foundation (now LIVESTRONG), which published A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies in 2004.17 The Institute of Medicine (IOM)s 2006 report, From Cancer Patient to Cancer Survivor: Lost in Transition, addressed the extensive long-term needs of cancer survivors.18 In 2008, the Oncology Nursing Society (ONS) included caring for the long-term cancer survivor in its research agenda.15 Survivorship issues are becoming a higher priority at the national level as the IOM, CDC, NCI, and others actively advocate for research and education to address the needs of the growing numbers of cancer survivors.
The IOM identified 4 major components of cancer survivorship care: prevention, surveillance, intervention, and coordination (Table).18 Prevention is defined as the promotion of healthy lifestyle behaviors for the patient with the goal of preventing cancer recurrence, a secondary cancer occurrence, or other late effects.18-20 Surveillance is defined as the monitoring and assessment of cancer spread, cancer recurrence, and secondary cancers; and physical and psychosocial late effects. Intervention addresses the management of symptoms from the effects of cancer and its treatment that impact the 4 domains of quality of life (QOL): physical, psychological, social, and spiritual.18-20 Coordination of care is the collaboration and communication between the oncology inter- disciplinary team and the cancer survivor’s primary care physicians (PCPs) to ensure that the survivor’s needs are met.18-20 The IOM stated that it is critical to the survivor’s long-term health to facilitate the transition of care from active treatment to posttreatment care.18
As reported by Grant and colleagues,20 in 2006 the City of Hope developed and implemented the Survivorship Education for Quality Cancer Care program with funding from the NCI. The goal of the program was to initiate change in survivorship care through the participation of 204 multidisciplinary cancer care teams from around the United States. The teams developed goals for their institutional programs, and the progress toward those goals was tracked for 18 months. The goals encompassed program planning, prevention and detection, surveillance, interventions for symptoms associated with cancer therapy, and coordination of care. Study outcomes showed that primary goals were more frequently formulated in the program development domains and less frequently in the domains of prevention and detection. The biggest barrier identified for goal implementation was limited financial resources. The findings indicate that further emphasis will need to be placed on the development of survivorship programs that consistently incorporate all 4 domains of survivorship care. The study also outlined the steps to implement survivorship care, including an assessment of current resources available on survivorship, a survey of the needs of cancer survivors in specific populations, the identification of staff, and institutional priorities related to survivorship.20
Cancer survivorship must be recognized as a distinct phase in cancer care.18 To address the needs of survivors, a better understanding of the issues that cancer survivors face is needed.11 Strategies can then be developed to meet these needs and to care for cancer survivors. Currently, there is quite a bit of variance in the practice of how survivors are followed, and the IOM reports that many survivors are lost to follow-up.18 Therefore, evidence-based practice guidelines for follow-up and surveillance need to be developed to establish a standard of care for the cancer survivor.18
Ganz identified three Ps in survivorship care: palliation of ongoing symptoms, prevention of late effects of cancer treatment or secondary cancers, and health promotion to maximize future wellness.21 Aziz emphasized that regular follow-up is imperative to ensure the timely diagnosis and treatment of long-term complications, to prevent recurrence or secondary cancers, to detect comorbid conditions, and to offer health promotion strategies.19 His report stated, “The prevention of late effects, secondary cancers, and recurrence of primary disease requires watchful follow-up and optimal utilization of early detection screening techniques.”19 The interdisciplinary cancer team and PCPs need to identify and address needs at the onset of cancer diagnosis and offer timely interventions that will prevent or diminish potential or actual late and long-term effects.22,23 QOL can be improved for the survivor when survivorship care is initiated at the time of diagnosis.22
A Cancer Survivorship Model
In the influential 1985 article by Mullan,3 “Seasons of Survival,” he described a model for cancer survivorship in which survivorship begins at diagnosis and requires early identification and intervention to positively impact QOL and patient outcomes. He identified the 3 seasons of survival as acute, extended, and permanent.
Acute survival begins at the time of cancer diagnosis and goes through the completion of initial treatment. Throughout this season, anxiety and fear are common experiences because of the enormous impact the diagnosis has on the survivor’s life and future. Treatments and effects from the treatments dominate the survivor at this time. The transition from acute to extended survival is challenging. Mullan found that through the extended survival period the healthcare team tended to be ineffective in the facilitation of transition and preparation of the patient, failing to provide sufficient knowledge and education about projected needs.3
Extended survival is the period when the acute phase of care is completed and the patient enters watchful waiting with surveillance and possible intermittent therapy. This season is often associated with fear of recurrence and dealing with the long-term effects from treatments.
Permanent survival is defined as “a period when the activity of the disease or the likelihood of its return is sufficiently small that the cancer can now be considered permanently arrested.” In this season, the problems faced by the survivor include finding or keeping employment, health insurance coverage and other financial issues, and experiencing the late effects of therapy. The “Seasons of Survival” provides clinicians a model to assist with the identification of their patients’ needs in the cancer survivorship trajectory.3
In 2011, Miller and colleagues6 redefined the “Seasons of Survival” model of care by adding 3 additional seasons: transition, chronic survivorship, and end of life. Transition acknowledges that a survivor evolves from cancer patient to survivor and must create a “new normal.” Chronic survivorship includes those who, as a result of the advances in cancer treatments, are living with chronic or metastatic disease. End of life distinguishes the time when cancer therapy is no longer effective and the disease progresses. The healthcare community needs to offer prevention, surveillance, intervention, and coordination in all seasons of survival.6
Medical Workforce Shortage
The growing deficit of medical oncologists is estimated to reach 48% by 2020.10 This shortage will have a significant negative impact on the growing numbers of cancer survivors. Since 1997, there has been a 50% decline in the number of medical students choosing to practice as PCPs.12 Therefore, there is also a decrease in the number of PCPs who can assist with the care and management of the increased number of cancer survivors, which is anticipated to continue to grow by 1% per year.12 These projected workforce shortages, along with a continued decline in oncology specialists and PCPs, have resulted in a critical need to examine how care will be provided to cancer survivors. Cancer team specialists are challenged to develop innovative solutions to manage this problem.
Erikson and colleagues10 conducted a study that surveyed oncologists, oncology fellows, and fellowship program directors. The study also reviewed data from the American Medical Association using Surveillance, Epidemiology and End Results data that were examined to evaluate the supply and demand for oncology services through 2020. The study concluded that there is a projected 48% increase in demand for oncologists and only a 14% increase in the supply of services. To ensure that there is access to cancer services, Erikson calls on the American Society of Clinical Oncology, policymakers, and the public need to address the gaps in care. This study identifies opportunities to address the deficit by increasing the number of oncology fellowships, the use of nonphysician clinicians, and the role of the PCP for survivorship care, and also by designing a new cancer survivorship delivery of care model. Although the nurse navigator was not mentioned in this study, the breast nurse navigator is an emerging healthcare role that offers tremendous promise in bridging the survivorship care gap and is discussed later in this article.
Time, poor coordination of care, and the growing shortage in their ranks were all identified as barriers to PCPs’ participation in patient care.24 It has been reported that many oncology specialists are not involving PCPs in the acute phase of treatment; therefore, when the patient transitions into survivorship, it is not easy for the PCP to become involved in the patient’s care again.13 A majority (60%) of cancer survivors are over 60 years of age, and most have chronic comorbidities that are not being addressed in the face of their cancer diagnosis. Clearly, this is a missed opportunity to engage the primary care team in the care of the patient with cancer.24,25 PCPs report that they lack knowledge in cancer surveillance, believe they are ill equipped to care for the patient with cancer, and are not clear about their role in the care of the cancer survivor.26,27
Miedema and colleagues13 conducted a study surveying 183 patients with cancer to assess their involvement and perceptions regarding their PCP and oncology care team as well as to identify gaps in care from the patient’s perspective. In this research, 35% of those surveyed stated that they were unsure who was responsible for managing their care after acute cancer therapy. Cancer follow-up counseling was reported to be deficient by 80% of those surveyed, who further stated that counseling from their PCP or cancer specialist was a significant unmet need. Dissatisfaction with follow-up care was also reported. The patients who were surveyed stated that continuity of care was important and that gaps in survivorship care must be identified and addressed.13
As demonstrated in the studies relating to the medical workforce shortage, the escalation in the need for oncology services is related to the aging population (those 65 years and older), an increase in the number of cancer survivors, and overall population growth.10,18 Although many oncologists who are currently in practice are reaching retirement age,10 one study reported that they often desire to remain active in the care of cancer survivors, and patients reported that they were dependent on their relationship with their oncologist.26 Both cancer specialists and PCPs are becoming burdened by the growing population of cancer survivors who need follow-up care.18 Oncologists are being challenged to expand their scope to address long-term health issues, yet only 20% are providing health promotion education and information to their patients.28 PCPs are not prepared to actively manage the care of cancer survivors without additional training in cancer surveillance and improved communication with oncology specialists.13 A growing shortage in the medical workforce calls for innovative strategies to bridge these gaps.
Barriers to Survivorship Care
There are many barriers that both the cancer survivor and the provider face. The IOM identified 6 that are outlined in Figure 118:
A qualitative descriptive study25 surveyed 18 women who were aged 70 and older to identify barriers that they experienced while receiving care throughout the breast cancer trajectory. The researchers identified the following barriers: lack of patient information, care compounded by preexisting comorbid conditions, and multiple appointments with providers. The patients stated that they found the nurse navigator to be key in facilitating care and overcoming barriers to their cancer care. The study acknowledged that navigators positively impact patients’ care transitions as they move through the cancer care continuum.
Communication in the fragmented healthcare system has broken down and is inadequate to facilitate seamless care transitions.29 Poor communication and care coordination continues to occur between oncology specialists and PCPs; and this is a central barrier in survivorship care.17 Fragmented healthcare systems, lack of consistent workflow, inadequate care transitions, and deficient outcome measures can be a hazardous combination for the patient with cancer.29 Other barriers that were identified in the literature are disparities in care; lack of education on the late and long-term effects that can prevent maximum health outcomes; and no identified medical home for the cancer survivor.23 Patients need to learn how to become empowered and engaged to actively participate in their own care.24,29
In a joint report, the Committee on Cancer Survivorship of the IOM and the National Research Council of the National Academies identified that the transitions into cancer survivorship are critical to QOL and health outcomes for the cancer survivor.18 The varied settings where care transitions occur for the breast cancer survivor include NCI–designated cancer centers, community cancer programs, and ambulatory care settings.20 Kantsiper and colleagues stated that “a well-executed hand off with information sharing and guidance from oncology specialists to PCPs would facilitate a smooth transition.”26
Coleman defines care transitions as “the movement patients make between healthcare practitioners and settings as their condition and care needs change during the course of a chronic or acute illness.”30 The information that is exchanged with each transition between the patient and his or her healthcare providers is necessary to ensure execution of the plan of care and appropriate coordination of care.29 However, inadequate communication between healthcare providers can lead to poor patient outcomes.29
Transitions theory provides a framework as to how one experiences and moves through changes.31 The transitions framework has 3 expected stages: endings, the neutral zone, and beginnings. Endings are the letting go of relationships, roles, and connections before creating new ones. The ending is leaving the known and may be accompanied by a sense of loss or grief.31,32 The neutral zone is a time of reflection and insight that is met with confusion, anxiety, and feeling lost.31,32 The final stage, beginnings, is the phase that offers the opportunity to create new understanding and purpose.31,32 While a survivor cannot be rushed through these stages, he or she must be committed to move through them in order to advance in the survivorship journey.32 To provide assistance and guidance, the healthcare practitioner needs to recognize the stages of transition as the cancer survivor moves from diagnosis through acute treatment and into long-term survivorship.
Through the patient’s transition into survivorship, fear and anxiety are experienced, which prevents the survivor from progressing forward into living life fully.26,32,33 In 2011, the IOM reported that the average patient asks 5 or less questions during a 15-minute follow-up visit, which indicates that patients do not assume an active role in their care.24 Educating the patient at the time of diagnosis and throughout the trajectory of care is vital to empowering and preparing the patient for anticipated events and for the management of residual side effects and late effects from treatment. Survivors also need to be able to incorporate follow-up and surveillance activities into their life plan.33 Evidence shows that a patient who takes an active role in his or her care and cultivates patient–clinician communication has more positive health outcomes.24
Kantsiper and colleagues26 conducted a qualitative thematic study by holding focus groups with 21 cancer survivors, 15 PCPs, and 16 oncology specialists to explore the needs and priorities of the breast cancer survivor. Survivors said that they experienced anxiety and feelings of abandonment as they transitioned into survivorship. Both the cancer survivors and oncology specialists valued their relationship because they had acquired an invested connection. PCPs expressed their concerns about taking on the responsibility for surveillance and follow-up, related to their limited experience and knowledge in cancer survivorship care and the medical and legal implications. The study identified a breakdown in communication between patients, PCPs, and oncology specialists that inhibits seamless care transitions.26
Poorly coordinated care transitions can lead to increased utilization of the emergency department and hospital readmission rates, which leads to increased healthcare costs.34,35 Patients with chronic conditions can meet with up to 16 different providers in 1 year.29 Notably, patients who have complex healthcare conditions experience more care transitions, and the elderly are especially subject to being the most vulnerable population.29 Nurses help greatly to facilitate a care transition that ultimately improves care.32
The National Transitions of Care Coalition identified the following ways to facilitate transitions: improve communication between providers and patients, use electronic medical records, promote pharmacist involvement in medication reconciliation, and support professional care coordination and the development of performance measures that improve patient outcomes.35 Fragmented systems and poor communication heighten the risk for failure to meet the patient’s needs during transitions.35 The Agency for Healthcare Research and Quality conducted a recent survey with hospitals and discovered that 42% reported fragmented care.35 This occurred because of poor communication processes. Inadequate care transitions caused confusion about the patient’s condition and care, and resulted in duplicated tests, medication errors, inconsistent patient monitoring, delay in diagnosis, and lack of appropriate follow-up care. Inadequate care transitions also led to concerns with patient safety, quality of care, and health outcomes.35 To that end, the Centers for Medicare & Medicaid Services has provided a window of opportunity with the launch of an initiative that aims to improve the quality of care across settings by improving the transitions between settings.36
Coordination of Care
It is vital that the patient with cancer receive seamless care throughout his or her cancer trajectory. However, because of the increasing shortage of medical oncologists, patients are not receiving coordinated care.10 The study by Kantsiper and colleagues identified the current state of survivorship care as fragmented and uncoordinated.26 Patients are placed at a heightened risk when cancer care is not coordinated and prevention and surveillance education is not given to the survivor.18
The study by Mayer and colleagues27 reported that 89% of cancer survivors prefer to receive follow-up care from their medical oncologist. The majority of PCPs (90%) stated that they are responsible for the general preventive care of cancer survivors in their practice, and 70% of the patients surveyed reported that their PCP has some responsibility for their follow-up survivorship care. Oncology specialists and PCPs both identified the need for better coordination of care, and clarity for the provider role and responsibilities in survivorship care.27 Fragmented and limited communication between oncology specialists and the PCPs can lead to suboptimal preventive care.27
Care coordination encompasses the assessment of patient needs, the development and implementation of care, and the evaluation of the care plan.35-37 In coordinating care, the healthcare team needs to empower the patient and caregiver with education and information to facilitate the coordination of care.37 The IOM made a recommendation to develop and initiate the use of a survivorship care plan and treatment summary to facilitate care coordination within the fragmented healthcare system.18,24 The IOM identified a wide variation in how cancer survivors receive follow-up care and surveillance and, based on this variation, are recommending the utilization of a survivorship care plan and treatment summary.18 Oncology nurses reported that patients need more care coordination after their acute therapy is completed.35 The identified stakeholders for the survivorship care plan and treatment summary include the patient, the oncology specialist, and the PCP.14 The survivorship care plan and treatment summary should be a fluid document that is added to as shifts occur in the survivor’s care and management.14,22
The IOM recommendations for the components that should be included in the treatment summary are shown in Figure 2.
The essential items in the survivorship care plan include a follow-up care and management schedule, the providers responsible for follow-up, a list of symptoms of recurrence, and tests not routinely ordered.18,24 The survivorship care plan and treatment summary provides guidance for PCPs and other healthcare providers in caring for the cancer survivor.38
The survivorship care plan and treatment summary defines potential late and long-term effects for the breast cancer survivor. Long-term effects are defined as complications from treatment that remain well after the completion of acute therapy.19,37 Late effects include complications from treatment that occur months to years after the completion of acute therapy.19,39 For example, common side effects that breast cancer survivors experience are lymphedema, impaired fertility, premature menopause, an increased risk of osteoporosis, joint pain, stiffness, pain, fatigue, and distress.40 The completion of acute treatment signals the need for consistent and regular follow-up care to monitor for long-term and late-onset side effects, cancer recurrence, secondary malignancies, and to ensure that follow-up care, surveillance, and health promotion occur for the cancer survivor.40
Only 43% of all NCI-designated cancer centers provide survivorship care plans.14 Furthermore, the facilities that provide plans do not capture all of the IOM-recommended components.14 In 2012, the American College of Surgeons Commission on Cancer (CoC) added “Standard 3.3: Survivorship Care Plan” as part of the requirements for accreditation. The American College of Surgeons recognized the value of establishing a living document to facilitate education and care coordination to ensure that quality cancer care is provided.14
The National Accreditation Program for Breast Centers (NAPBC) developed standards for the delivery of breast care throughout the care trajectory; “Standard 2.5: Breast Cancer Surveillance” addresses surveillance and requires programs to institute a survivorship treatment summary and care plan for all breast cancer survivors.41 Survivorship care plans are recommended and endorsed by the President’s Cancer Panel, the CDC, and the LIVESTRONG Foundation.42
Noted barriers to providing survivorship care plans and treatment summaries include:
- A lack of consensus in what should be included in the plan
- No reimbursement by payers for a survivorship visit
- A care-provider culture change that is needed to recognize standards of care in order to deliver quality cancer care
- Technology, time, and resources allotted to create and administer the survivorship care plan and treatment summary.15,39
Diverse practice settings provide challenges to implementing a coordinated approach to the utilization of the survivorship care plan.43 Earle39 and Morgan15 recommend further research to validate the utilization of the survivorship care plan and treatment summary.
Burg and colleagues44 conducted 4 focus groups with a total of 32 breast cancer survivors to evaluate the types of information they received from their oncologist about follow-up care. Participants stated they were unprepared for long-term survivorship and lacked adequate information on follow-up care, surveillance, potential side effects and their management, and secondary cancers. The women in this study experienced undue distress, frustration, and abandonment because they felt unprepared for the transition into survivorship. They conveyed that they valued the survivorship care plan and treatment summary; however, they would have preferred to receive such documents at the time of diagnosis. Findings from this study indicate that survivorship care plans can facilitate better coordination of care.
Morgan15 conducted a literature and website review of data on cancer survivorship, QOL, and survivorship care plans. The review identified that cancer survivorship care requires a multidisciplinary approach and that healthcare providers need to have knowledge about possible long-term complications.15 These findings further support that survivorship care plans facilitate communication among providers, promote a standard of care, inform patients on cancer terminology, lead patients to community resources and support groups, and provide a schedule for follow-up care.15
Oncology Nurse Navigators
In 2010, the ONS and the National Association of Social Workers (NASW) published a joint position statement on patient navigation reinforcing the concept that survivors should be offered individualized assistance to help with eliminating barriers to care throughout the cancer care continuum.45 The C-change 2009 defined navigation as “individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers and facilitate timely access to quality health and psychosocial care from prediagnosis through all phases of the cancer experience.”45 The IOM reported that oncology-certified nurses are underutilized as a communication resource, and that when patients and caregivers communicate with these nurses, QOL can improve.24 Case46 defined navigation as “…a process by which nurses assess individual needs, plan for education, coordination, communication and support, implement effective transitions through the illness trajectory; and evaluate the effect on patient, family and organizational outcomes.”46 In 2010, research determined that the oncology nurse can be utilized to implement interventions to directly impact survivorship care.20 The IOM has also determined that further exploration is greatly needed regarding the utilization of PCPs and nonphysician clinicians in the facilitation of care and management of the cancer survivor.24
Also in 2010, Shockney rolled back the curtain to explore the evolution of navigation over the past 4 decades, beginning in the 1970s and 1980s, when nurses performed utilization reviews to evaluate and monitor medical needs in the inpatient setting.47 In the 1990s, case management was introduced to increase efficiency. Nurses helped to coordinate, monitor, and evaluate care, supported patient adherence to treatment, and helped patients gain access to resources. Related to the findings of hearings conducted by the ACS, the first patient navigation model was developed by Dr Harold Freeman in 1990 to address health disparities of the poor and eliminate barriers to care.48 Since the inception of patient navigation, its role has transformed and expanded to reach across the care continuum, identifying and reducing barriers to care and facilitating screening and diagnosis.
The role of a navigator can be filled by a peer, layperson, social worker, or nurse.49 The terms used in the literature to describe a navigator include cancer/oncology patient navigator, breast cancer patient navigator, case manager, and patient navigator.50 Navigation is multifaceted and involves an assessment of barriers to care, an assessment of compliance to treatment, and the coordination of care. Navigation also addresses patient concerns and questions, patient education, advocacy, and side-
effect management.47-49 A study conducted by Campbell and colleagues indicates that navigation increases patient satisfaction while removing barriers to facilitate care across the cancer trajectory.50 Ideally, the nurse navigator should be the consistent healthcare provider who can coordinate care along the continuum.51
The CoC has identified patient navigation as an integral part of the delivery of care to the cancer survivor. In its Cancer Program Standards of 2012, which is to be phased in by 2015, the CoC requires accredited programs to have navigation as a component. “Standard 3.1: Patient Navigation Process” requires an identified process for patient navigation that recognizes needs through a community needs assessment and addresses healthcare disparities and barriers to care.41 The NAPBC has instituted “Standard 2.2: Patient Navigation,” which requires an identified navigation process for the movement of the breast cancer survivor through the cancer care trajectory.52 NAPBC identifies in this standard that the patient navigator must have received specialized training in breast care to be competent and effective. These national professional organizations recognize the value of patient navigation, and now navigation is becoming a standard in cancer care delivery. In 2009, the National Coalition of Oncology Nurse Navigators (NCONN) published the “Oncology Nurse Navigator Core Competencies.”53
The oncology nurse navigator’s first encounter with a patient should provide education about the cancer care continuum and an interdisciplinary team model, which will help the patient accept this transition.33 Shockney raises a salient question, who will handle the long-term care needs of cancer survivors? Because oncology care is experiencing an increase in cancer survivors and a shortage of oncologists, the nurse navigator can play a vital role in developing a survivorship care transition model and facilitating and coordinating the implementation of the survivorship care plan and treatment summary.33
Marbach and Griffie54 surveyed 40 cancer survivors grouped by disease and conducted a thematic analysis that looked at patient preference for receiving information about survivorship care plans. The authors identified that oncology nurses are best positioned to assess a survivor’s individual and unique needs and provide effective methods of education.54 In the study, patients reported experiencing fear and anger and feeling overwhelmed at the time of consultation. This produced confusion about multidisciplinary team roles.54 Patients stated that they wanted a survivorship care plan and would feel comfortable in receiving their care plan and treatment summary from an oncology nurse.54 The study concluded that nurses can have a pivotal role in the development, delivery, and clarification of the survivorship care plan and treatment summary and facilitate care
Patients with cancer have stressed that the oncology nurse navigator is key in facilitating transitions in care, providing patient education, fostering understanding of the plan of care, and facilitating multidisciplinary team communication throughout the care continuum.25,55 The experienced oncology nurse is best qualified and suited for the role of nurse navigator across the cancer trajectory.56 Patient navigators have improved patients’ access to care, facilitation and coordination of care, and management of side effects, which has decreased complications and increased patients’ and families’ QOL.56 The navigator is the connection between care providers and offers seamless care and proposes strategies to improve patient outcomes.57 The oncology nurse navigator is optimally positioned to facilitate transitions in a cancer survivor’s care that lead to improved QOL and health outcomes.
Significant strides have been made in the care and treatment patients with cancer receive. This is evident by an increasing number of patients who become cancer survivors. The report American Cancer Society Cancer Treatment & Survivorship facts & figures, 2012-2013 projects substantial increases in survivors over the next decade.8 Yet, currently, survivors’ physical, psychological, social, and spiritual needs are not being met, which is impacting their QOL and health outcomes. Quality survivorship care is at the forefront of the national agenda for cancer care. The IOM as well as several national professional organizations—including the Academy of Oncology Nurse Navigators—are making significant efforts to place the needs of cancer survivors at the top of the agenda and to develop evidence-based strategies to address the current barriers to care.
The barriers identified in the literature include workforce shortages, communication deficiencies, poor coordination of care, fragmented systems, lack of identified clinicians for follow-up surveillance, lack of evidence-based surveillance guidelines, and an effective survivorship delivery of care model.18 After careful review of the literature, it is evident that medical oncologists and PCPs are not equipped to meet the needs of the survivors alone. Nurse navigators provide a solution to eliminate care barriers. The question is, how are oncology nurse navigators positioned to provide a transition of care throughout the cancer trajectory, provide education, care coordination, and facilitate excellence of care that would provide the greatest impact on QOL and health outcomes?
Evidence supports the role of the oncology-certified nurse as directly impacting QOL for patients, because patients spend more time with their oncology nurses and receive ongoing education and support from the nurse.55 Nurse navigators play an important and valuable role in the facilitation of communication with the multidisciplinary team and directly coordinate care for the cancer patient.20,33,55,56 The identified barriers to survivorship care call for evidence-based solutions to care coordination. The evidence supports the concept that trained and certified oncology nurse navigators are best qualified to facilitate the transitions in care that can directly impact patients’ QOL and health outcomes while providing a solution to the growing deficits in oncology and survivorship care providers.
Author Disclosure Statement
Danelle Johnston, RN, MSN OCN, CBCN, St. Jude Medical Center, 2151 N. Harbor Boulevard, Fullerton, CA 92855; e-mail Danelle.firstname.lastname@example.org.
The author has nothing to disclose.
1. Centers for Disease Control and Prevention. Basic information about cancer survivorship. http://www.cdc.gov/cancer/survivorship/basic_info/index.htm. Updated July 1, 2013. Accessed August 15, 2013.
2. Doyle N. Cancer survivorship: evolutionary concept analysis. J Adv Nurs. 2008;62(4):499-509.
3. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313(4):270-273.
4. National Coalition for Cancer Survivorship. Our mission. http://www.canceradvocacy.org/about-us/our-mission/. Accessed July 31, 2013.
5. National Cancer Institute. NCI dictionary of cancer terms. http://www.cancer.gov/dictionary?cdrid=450125. Accessed May 23, 2013.
6. Miller K, Ben-Aharon I, Haines L. Seasons of survival; redefining the paradigm for cancer survivorship for 2011. J Oncol Navigat Surviv. 2011;2(5):12-15.
7. Mariotto AB, Yabroff KR, Shao Y, et al. Projections of the cost of cancer care in the United States. J Natl Cancer Inst. 2011;103(2):117-128.
8. American Cancer Society. Cancer treatment & survivorship facts & figures 2012-2013. http://www.cancer.org/acs/groups/content/@epidemiology surveilance/documents/document/acspc-033876.pdf. Accessed July 30, 2013.
9. National Cancer Institute. Cancer costs projected to reach at least $158 billion in 2020. http://www.cancer.gov/newscenter/newsfromnci/2011/Cost Cancer2020. Accessed July 30, 2013.
10. Erikson C, Salsberg E, Forte G, et al. Future supply and demand for oncologists: challenges to assuring access to oncology services. J Oncol Pract. 2007;32(2):79-86.
11. Fairley TL, Pollack LA, Moore AR, Smith JL. Addressing cancer survivorship through public health: an update from the Centers for Disease Control and Prevention. J Womens Health (Larchmt). 2009;18(10):1525-1531.
12. Manolakis PG, Skelton JB. Pharmacists’ contributions to primary care in the United States collaborating to address unmet patient care needs: the emerging role for pharmacists to address the shortage of primary care providers. Am J Pharm Educ. 2010;74(10):S7.
13. Miedema B, MacDonald I, Tatemichi S. Cancer follow-up care. Patients’ perspectives. Can Fam Physician. 2003;49:890-895.
14. Salz T, Oeffinger KC, McCabe MS, et al. Survivorship care plans in research and practice. CA Cancer J Clin. 2012;62:101-117.
15. Morgan MA. Cancer survivorship: history, quality-of-life issues, and the evolving multidisciplinary approach to implementation of cancer survivorship care plans. Oncol Nurs Forum. 2009;36:429-436.
16. National Coalition for Cancer Survivorship. Timeline of achievements. http://www.canceradvocacy.org/about-us/what-weve-done/. Accessed August 8, 2013.
17. A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Centers for Disease Control and Prevention; Lance Armstrong Foundation. http://www.cdc.gov/cancer/survivorship/pdf/plan.pdf. Accessed August 15, 2013.
18. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. National Cancer Policy Board. Institute of Medicine. Washington, DC: The National Academies Press. http://www.nap.edu/catalog/11468.html. Published 2006. Accessed August 15, 2013.
19. Aziz NM. Cancer survivorship research: state of knowledge, challenges and opportunities. Acta Oncol. 2007;46:417-432.
20. Grant M, Economou DD, Ferrell BR. Oncology nurse participation in survivorship care. Clin J Oncol Nurs. 2010;14(6):709-715.
21. Ganz PA. The ‘three Ps’ of cancer survivorship care. BMC Med. 2011;9:14.
22. Shockney LD. It’s (supposed to be) a wonderful life: a case study demonstrating the positive impact of survivorship care. J Oncol Navig Surviv. 2011;2(6):39-41.
23. Pratt-Chapman M, Simon MA, Patterson AK, et al. Survivorship navigation outcome measures: a report from the ACS Patient Navigation Working Group on survivorship navigation. Cancer. 2011;117(suppl):3575-3584.
24. Institute of Medicine. Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care: Workshop Summary. Washington, DC: The National Academies Press. http://www.nap.edu/openbook.php?record_id=13155. Published 2011. Accessed August 15, 2013.
25. Pieters HC, Heilemann MV, Grant M, Maly RC. Older women’s reflections on accessing care across their breast cancer trajectory: navigating beyond the triple barriers. Oncol Nurs Forum. 2011;38(2):175-184.
26. Kantsiper M, McDonald EL, Geller G, et al. Transitioning to breast cancer survivorship: perspectives of patients, cancer specialists, and primary care providers. J Gen Intern Med. 2009;24(suppl 2):S459-S466.
27. Mayer EL, Gropper AB, Neville BA, et al. Breast cancer survivors’ perceptions of survivorship care options. J Clin Oncol. 2012;30(2):158-163.
28. Demark-Wahnefried W, Aziz NM, Rowland JH, Pinto BM. Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer. J Clin Oncol. 2005;23(24):5814-5830.
29. Lattimer C. When it comes to transitions in patient care, effective communication can make all the difference. Generations. 2011;35(1):69-72.
30. Coleman EA. Care transitions is a team sport, and yet all too often we don’t know who our teammates are, or how they can help. The Care Transitions Program. http://www.caretransitions.org/definitions.asp. Accessed May 27, 2012.
31. Bridges W. Transitions Making Sense of Life’s Changes. 2nd ed. New York, NY: Da Capo Press; 2004:3-5;105,133,157.
32. Rancour P. Using archetypes and transitions theory to help patients move from active treatment to survivorship. Clin J Oncol Nurs. 2008;12(6):
33. Shockney L. Where does navigation fit into long-term survivorship care? J Oncol Navigat Surviv. 2010;1(4):1-2.
34. Coleman EA, Smith JD, Frank JC, et al. Preparing patients and caregivers to participate in care delivered across settings: the Care Transitions Intervention. J Am Geriatr Soc. 2004;52(11):1817-1825.
35. National Transitions of Care Coalition. Improving transitions of care. http://www.ntocc.org/Portal/0/PDF/Resources/PolicyPaper.pdf. Accessed December 10, 2012.
36. Ventura T, Brown D, Archibald T, et al. Improving care transitions and reducing hospital readmissions: establishing the evidence for community-based implementation strategies through the Care transitions theme. Remington Report. January-February 2010:24-30.
37. National Transitions of Care Coalition. Transitions of Care Measures. http://www.ntocc.org/Portals/0/PDF/Resources/TransitionsOfCare_Mea sures.pdf. Accessed December 10, 2012.
38. Shockney L. Breast Cancer Survivorship Care: A Resource for Nurses. Sodbury, MA; Jones & Bartlett Publisher. 2011;16-17.
39. Earle CC. Failing to plan is planning to fail: improving the quality of care with survivorship care plans. J Clin Oncol. 2006;24(32):5112-5116.
40. Siegel R, DeSantis C, Virgo K, et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220-241.
41. American College of Surgeons. Cancer Program Standards 2012: Ensuring Patient-Centered Care. http://www.facs.org/cancer/coc/programstan dards2012.pdf. Accessed August 8, 2013.
42. Hewitt ME, Bamundo A, Day R, Harvey C. Perspectives on post-treatment cancer care: qualitative research with survivors, nurses, and physicians. J Clin Oncol. 2007;25(16):2270-2273.
43. Smith SL, Singh-Carlson S, Downie L, et al. Survivors of breast cancer: patient perspectives on survivorship care planning. J Cancer Surviv. 2011;5(4):337-344.
44. Burg MA, Lopez ED, Dailey A, et al. The potential of survivorship care plans in primary care follow-up of minority breast cancer patients. J Gen Intern Med. 2009;24(supp 2):S4
45. Oncology Nursing Society, the Association of Oncology Social Work, and the National Association of Social Workers Joint Position on the Role of Oncology Nursing and Oncology Social Work in Patient Navigation. http://www.ons.org/Publications/Positions/Navigation. Accessed August 8, 2013.
46. Case MA. Oncology nurse navigator. Clin J Oncol Nurs. 2000;15(1):33-40.
47. Shockney LD. Evolution of patient navigation. Clin J Oncol Nurs. 2010;14(4):405-407.
48. Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer. 2011;117(suppl 15):3539-3542.
49. Gilbert JE, Green E, Lankshear S, et al. Nurses as patient navigators in cancer diagnosis: review, consultation and model design. Eur J Cancer Care (Engl). 2011;20(2):228-236.
50. Campbell C, Craig J, Eggert J, Bailey-Dorton C. Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncol Nurs Forum. 2010;37(1):61-68.
51. Pedersen A, Hack TF. Pilots of oncology health care: a concept analysis of the patient navigator role. Oncol Nurs Forum. 2009;37(1):55-60.
52. National Accreditation of Breast Centers. Program standards. http://www.napbc-breast.org/standards/2012standardsmanual.pdf. Accessed January 6, 2013.
53. Francz S, Simpson K. Oncology nurse navigators: a snapshot of their educational background, compensation, and day-to-day roles and responsibilities. Oncology Issues. 2013;Jan/Feb:36-42.
54. Marbach TJ, Griffie J. Patient preferences concerning treatment plans, survivorship care plans, education and supportive services. Oncol Nurs Forum. 2011;38(3):335-342.
55. Korber SF, Padula C, Gray J, Powell M. A breast navigator program: barriers, enhancers, and nursing interventions. Oncol Nurs Forum. 2011; 38(1):44-50.
56. Wilcox B, Bruce SD. Patient navigation: a “win-win” for all involved. Oncol Nurs Forum. 2010;37:21-25.
57. Gentry S. Navigation principles across the continuum. J Oncol Navigat Surviv. 2012;3(4):30-34.
Part 3 of a 5-Part Series Patient Education, Advocacy & Resources (www.gene.com): The patient resources on this website include details on a range of Genentech-partnered programs for people faced with [ Read More ]