Oncology Nurse Navigators and the Continuum of Cancer Care

Seminars in Oncology Nursing, Vol 29, No 2 (May), 2013: pp 105-117

105

ONCOLOGY NURSE NAVIGATORS AND THE CONTINUUM OF CANCER CARE LORI MCMULLEN OBJECTIVES: To discuss the role and challenges of the oncology nurse navigator working within a multidisciplinary team caring for patients with various types of cancers.

DATA SOURCES: Published empirical research and critical analysis articles. CONCLUSION: The experienced oncology nurse in the role of navigator has the disease-specific knowledge necessary to provide patient-centered care throughout the cancer continuum and promote positive patient outcomes. The role of the oncology nurse navigator has a positive impact on both the patient and the cancer team by providing continuity of care and improved communication.

IMPLICATIONS

FOR

NURSING PRACTICE: Oncology nurse navigators need

a concrete definition of their role and function as they serve not only the patient but the cancer care system in which they work. Acknowledging foundational concepts as a guide, programs can then develop and expand. The role needs to be flexible as the health care system changes. Future development of the role can be guided by oncology nurse navigators who evaluate their programs and identify common challenges and system barriers.

KEY WORDS: Oncology nurse navigator, cancer continuum, continuity of care, program development

I

T IS WELL recognized that patients and their families, when confronted with cancer diagnoses, are often faced with fragmented care, gaps in provider communication, emotional

distress, and potential or realized socioeconomic issues. Patient navigators have been introduced to the cancer continuum as a means to improve timeliness to optimal patient-centered care by reducing

Lori McMullen, RN, MSN, OCNÒ: Senior Oncology Nurse Navigator, Edward and Marie Matthews Center for Cancer Care, University Medical Center of Princeton at Plainsboro, NJ.

Address correspondence to Lori McMullen, RN, MSN, OCNÒ, 564 Cleardale Ave., Ewing, NJ 08616. e-mail: [email protected] Ó 2013 Elsevier Inc. All rights reserved. 0749-2081/2902-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2013.02.005

106

L. MCMULLEN

barriers, improving patient outcomes, offering patients seamless and efficient transitions of care, and improving patient satisfaction and overall quality of health care.1,2 Originally developed to promote improved access to quality cancer care for the underserved,3 the role of the patient navigator has evolved to improve oncology services offered to all socioeconomic and diverse ethnic groups. This philosophy is reflected in the American College of Surgeons Commission on Cancer mandate requiring cancer programs to have navigation processes.4 Patient navigators are quickly becoming an integral part of cancer care services. An unfortunate consequence is that navigators are often not fully prepared, placed into positions without a thorough assessment of cancer program needs, and may perform functions with little evidence to support the efficacy of the navigation process. Defining the patient navigation role is challenging. Roles and responsibilities of the navigator should reflect the needs of the patient, the community, and the organization,5,6 but there is no consensus concerning scope of practice, qualifications, and competencies for navigators. Across the country, navigation positions are filled by lay people, social workers, case managers, and nurses with various levels of licensure and educational training.5 While there is no right or wrong person to be a navigator, nurses are in the role struggle with owning the position that is frequently referred to as having its roots in the function of social work7 and care management models.8 This article provides discussion on the foundational concepts that support the role of the oncology nurse as navigator in cancer care. For this discussion, the oncology nurse navigator (ONN) is considered a general nurse navigator working across multiple cancer diagnoses. A review of a proposed conceptual framework, role definition and key functions, and ONN program development and challenges are discussed.

REVIEW OF LITERATURE A literature search of the CINAHL and Google Scholar databases was done using the terms navigator, patient navigator, navigation, cancer/ oncology nurse navigator, cancer care coordinator, care coordinator, survivorship navigator,

transitional care navigator, and transitional care nurse. Of interest, there were no publications that resulted from the key word oncology nurse navigator. The search was limited to articles published in English from 2006 to 2012. All abstracts were reviewed for relevance. The results included several critical analyses that describe the development and evaluation of navigation programs, the role and function of navigators, and the perceived benefits and proposed future research of navigation programs. Because the focus of this discussion concentrates on oncology nurse navigation, an attempt was made to eliminate studies and publications dedicated to non-nurses in the role of navigator or navigators working in care settings other than oncology or in the breast care arena. A number of studies did not qualify the educational background of patient navigators or delineate that the navigator was a nurse. Publications that used the word navigator/navigation to describe surgical procedures or topographical/directional navigation were excluded. The search produced a number of publications relating to research dedicated to the process of navigation or navigators, with the majority of recent studies within the last 2 years. Thirteen empirical research studies were relevant to this discussion (Table 1).1,2,8-18 Conceptual Framework The use of a conceptual framework can help guide the navigation process by improving the effectiveness of programs as they are developed. A conceptual framework can help organize opinions, assumptions, and values, and assist in the development of objectives, measurement of achievement, and criteria for program evaluation.19 In an attempt to provide a validated model of professional navigation and to better understand the role of the ONN and the navigational process, a conceptual framework using the Synergy Model was introduced by Case.20 Developed by the American Association of Critical Care Nurses and validated in 1997, the Synergy Model21 promotes improved patient outcomes when patient needs and nursing competencies work together. This synergy extends to the multi- and inter-disciplinary health care team as the navigator acts as the link for the patient and the system; the navigator promotes synergy with the patient and within the health care system. The principal patient characteristics that

TABLE 1. Review of Empirical Research Source

Purpose/Objectives 8

Campbell et al (2010)

Hunnibell et al (2012)9

Swanson and Kock (2010)10

Koch, Nelson, Cook (2011)2

Thygesen et al (2011)11 (Denmark)

Findings

Limitations

107

Program evaluation of Stratified sample of 100 newly Patients with cancer and oncology Small sample size, validity and a comprehensive community diagnosed patients with cancer staff reported patient navigation is reliability of testing tool, no cancer program evaluating patient and program staff, comparing effective by increasing patient demographic data reported and staff perception of patient results between navigated and satisfaction and decreasing preparation for treatment, access non-navigated patients barriers to care to care, and overall satisfaction Program evaluation to determine if Data collection of time intervals Implementation of a cancer care Patient satisfaction and costnavigator intervention improved between dates of first suspicion of coordinator or navigator program effectiveness not assessed. timeliness in diagnosis of lung lung cancer, diagnosis, and can improve overall timeliness of Program had use of fully cancer treatment from suspicion initiation of treatment non-small cell lung cancer care integrated electronic record to initiation of definitive treatment and satisfaction of primary care system that enabled providers implementation of navigation process and data collection Qualitative descriptive study using Individual interviews and focus Results support a bi-dimensional Majority of participants were women, a two-step approach to validate group with professional framework and define key role most participants supported the empirical content of a binavigators, patients and family functions to bring clarity to the role role of the professional cancer dimensional professional members, and staff. Formal and functions of professional navigation role and believed in the navigation framework consultations with experts navigators and suggests relevant role managers and researchers outcomes for program evaluation Investigating the role of the oncology A retrospective chart review of Patients seen by the ONN tended to Convenience sampling; possible nurse navigator (ONN) distress scores at admission and have lower distress scores as well bias as questions were asked of intervention to decrease distress discharge comparing patients as increasing patient satisfaction; nurses; sample size and use in in adult patients with cancer seen by the ONN with those not patients benefit from having an only one facility seen ONN to answer questions and provide education about their disease Evaluation of value and A comparison of patient outcomes Time interval between diagnostic Results were not statistically effectiveness of a patient before and after the biopsy to first consult was significant; small sample size, navigation program in terms of implementation of a navigation reduced, time interval between homogenous sample timeliness of access to cancer program biopsy and initiation of cancer demographic; navigation tool was care, resolution of barriers, and treatment was reduced, 71% of self-report log patient satisfaction patient barriers were resolved, patients were highly satisfied with navigation experience An investigation of the experiences A phenomenological-hermeneutical Affectional bonds were made with Small sample size; sample was all of nurse navigation offered to longitudinal study performed the nurse navigator; patients felt female patients over a defined time period using semi-structured interviews they benefited from navigation in the cancer trajectory of patients from referral until 2 services; patients were months after discharge from the disappointed and felt rejected hospital when contact with the nurse navigator stopped (Continued )

GUIDING PATIENTS THROUGH THE CONTINUUM OF CANCER CARE

Fillon et al (2012)1

Methods

108

TABLE 1. Source

Purpose/Objectives 12

Fillion et al (2009) (Canada)

Carroll et al (2010)13

Seek and Hogle (2007)14

Parker et al (2010)15

Walsh et al (2010)16 (Australia)

Christie et al (2008)17

Hook et al (2010)18

Methods

Evaluate the impact of adding Comparison of patients with and professional nurse navigator to without the presence of the care of head and neck cancer a navigator patients in providing continuity of care and patient empowerment Examination of how navigation Post-study patient interviews from influences patients’ perspectives randomized controlled trial of on quality of their cancer care usual care versus navigation services from diagnosis to completion of treatment

Findings Positive influence noted on continuity of care and empowerment by having a professional nurse navigator Navigation services were beneficial for emotional support, assistance with information needs, problem solving, and coordination of care

Limitations A cross-sectional and nonequivalent group design; single time measurements; limited sample size

Majority of participants were female with breast cancer, had insurance, and spoke English; several participants had cognitive difficulties; interviewer received communication training Development of a patient Nurse practitioner in a community Time decreased from diagnosis to Clinic held on Friday, requiring a 2coordinator or navigator for cancer center coordinates treatment; coordination of day waiting period for treatment patients with suspected or newly services and provides guidance services for patients with lung recommendations and a conflict in diagnosed lung cancer and support for patients cancer optimizes outcomes; scheduling when practices close navigation services promote early for the weekend; patients are increased patient satisfaction disappointed to loose services of the navigator in the treatment phase and thereafter To develop a structured protocol for A qualitative study using extended Navigator actions can be Validity needs to be tested through describing and characterizing observations to categorize types categorized into two dimensions: application and at other sites; specific activities related to their of tasks and navigator actions individual/organization entities program effectiveness is not goals and types of tasks tested An exploration of the views and Exploratory descriptive qualitative Seven major components were Family physicians were underexperiences of key stakeholder to study using focus groups of identified as essential for effective represented; possible bias from identity the key components of patients and clinicians involved in cancer care coordination large representation of care cancer care coordination cancer care coordinators; possible patient recall bias Evaluation of patient navigator (not Prospective, randomized trial Navigator improves compliance with Small sample size, high no-show identified as professional) screening colonoscopy in lowrate, which reduced recruitment; intervention to overcome income minorities navigator was identified as organizational barriers to lowa health educator income minorities to obtaining colonoscopy Evaluate patient satisfaction among Non-experimental, descriptive study Patients receiving nurse navigation Lack of geographic, ethnic, racial, newly diagnosed breast cancer reviewing nurse navigation for breast care are highly satisfied and socioeconomic diversity, lack patients in a rural setting using services over a 2-year period with the services offered in this of reliability of research tool, a nurse navigation model aimed at evaluating patient setting possible research bias satisfaction (researcher-developed navigation program)

L. MCMULLEN

(Continued)

GUIDING PATIENTS THROUGH THE CONTINUUM OF CANCER CARE

are the core of the Synergy Model are stability, complexity, vulnerability, predictability, resiliency, participation in decision-making, participation in care, and resource availability. As the nurse uses a caring practice, clinical expertise, and management of complex systems, a parallel can be seen between the Synergy Model and the role of the ONN. The ONN creates partnerships by directing or managing the disease course of a cancer patient and family through the health care maze by providing patient-centered care and promoting empowered decision-making and patient selfefficacy throughout the disease trajectory. The Role of the Oncology Nurse Navigator The Oncology Nursing Society defines the process of navigation as ‘‘individualized assistance offered to patients, families, and caregivers to overcome health care system barriers and facilitate timely access to quality health and psychosocial care.’’22 The role of the ONN is not as easily defined. In the literature, authors frequently use the term patient navigator interchangeably with the terms nurse navigator and care coordinator; there is a recognized overlap with the role of the case manager.8 Adding to the confusion associated with the role of the nurse navigator is the lack of an accepted standard definition of the role and a variety of approaches used to define the role.1,23 The literature shows that the roles and responsibilities of navigators are determined by the facilities or area that they serve and is operationalized differently depending on the care setting.6,8 Over the past 20 years, the navigator role has been filled by a variety of laypersons and professionals with no consensus as to who should be a navigator.7 Qualifications remain controversial and inconsistent.18 A number of articles call for a professional registered nurse to fill that role.12,14,24,25 The professional nurse is able to assess both physical and psychological health while providing therapeutic communication through emotional support and compassion. A concept analysis by Pedersen and Hack6(p59) suggests that the role is evolving and requires:  a trained individual who facilitates timely access to appropriate health care and resources for patients and their families;  a skilled communicator who provides holistic care, empowering patients with education and knowledge about their illness; and

109

 an individual who is knowledgeable of the cancer system. Presently, there are no recognized professional standards or competencies supported by evidence-based data. Because qualifications to be a nurse navigator have not been clearly defined by professional experience, educational degree, or national certification, the role of the nurse navigator is best suited to the skill set of an experienced oncology nurse.5,14 Desimini et al propose that ‘‘when identifying the patients’ educational, physical, and psychosocial needs, the experienced oncology nurse can enhance and strengthen the nurse navigator role, as experienced oncology nurses often help with the development of individualized cancer care plans.’’25(p26) An Oncology Certified Nurse (OCNÒ), a nationally recognized certification through the Oncology Nursing Certification Corporation, has the comprehensive oncology knowledge base to fill this role. OCNÒ certification recognizes that the experienced oncology nurse has the knowledge necessary to affect positive patient outcomes. An OCNÒ is able to discuss side-effect management, treatment plans, further options, resources, and support.10 Additionally, many ONNs are considered generalists, working across multiple cancer diagnoses. It is possible to have referrals for a different sitespecific cancer with every phone call. It is essential for an ONN to understand cancer pathophysiology, processes of diagnosis and staging, the modalities, options, and resources indicated in cancer treatment, disease progression, survivorship, and endof-life issues.

FACILITATING CONTINUITY OF CARE The ONN in many cancer programs is relied upon to provide continuity of cancer services across the organization and health care system. Intervention by the ONN not only promotes timely access to care,1,5,25 but also supports improved communication across the organization for the patient and the cancer care team. Communication is operationalized through connections and networking with physicians and clinicians inside and outside the organization, office staff, and schedulers throughout the health care system and community service providers. Even though navigators are often resourceful, flexible, and sometimes a bit tenacious in their efforts to provide synergy with the patient and

110

L. MCMULLEN

the health care system, there are several core responsibilities or services that are a common denominator to the role. ONNs are charged with patient assessment and identification of patientspecific needs, identifying barriers, locating resources and financial assistance, coordinating services, and providing education7,8 while working within the culture and customs of the local community. There is no consensus around an optimal point in the cancer continuum for patients’ entry into the navigation process and the services of a nurse navigator. There are programs where the navigator enters only at times of high stress, or to triage symptom management as patients enter active treatment. Delivery gaps are most often identified at predictable points in the cancer continuum: time of abnormal screening or initial diagnosis,5,9,14,25-27 at the end of active treatment, and when patients enter into palliative care.6 Navigators routinely report that they remain with their patients throughout the cancer continuum into end-of-life or hospice care (B. Mchale, RN and S. Jacobs, RN, personal communication, 2012), but most services are provided at the ‘‘front end’’ of the cancer continuum, at the point of diagnosis. Regardless of the specific cancer diagnosis, the patient-navigator relationship begins at the initial contact with the patient. At this point, the ONN becomes the constant point of contact for the patient, promoting a close relationship and trust. The ONN engages the patient by performing a clinical assessment that includes providing support and education to reduce anxiety; coordinating continued diagnostic services, second opinion consultations, and appointments; mobilizing financial resources; and identifying potential or realized barriers to care. Every patient must be considered as an individual with a unique set of beliefs, assumptions, cultural values, lifestyle, co-morbidities, and challenges in facing cancer and its treatment. The person in the role of navigator often acts as the problem-solver or trouble-shooter who functions in a reactive role within the cancer care team.5 It is imperative, however, that the ONN has knowledge of the intricacies of the health care system both internally, such as knowing who to call to set up charity care or what days a surgeon sees patients in clinic, and externally, such as knowing how connect a patient with a care manager, insurance company, and the expected time frame for processing disability forms. When barriers are identified, having the knowledge of these

processes helps to streamline care, avoid delays, and allows the ONN to inform the patient of the plan of care and expected time frames involved. Frequently, an ONN ‘‘does it all.’’ In addition to patient and family education, the ONN makes appropriate referrals based on anticipated needs and available services to promote optimal outcomes. For example, ONNs refer patients to integrative therapy, fertility preservation, psychosocial and financial counseling services, community wellness, recovery and survivorship programs, and palliative and hospice care. If there is no support staff, the ONN will often assume responsibility for transferring records and medical imaging discs, securing prior authorizations, and enrolling patients in pharmaceutical support programs, all with the goal of providing seamless and efficient patient care. Depending on the needs of the organization, additional tasks can include preparing navigation cases for multidisciplinary tumor board, identifying patients who are potential candidates for clinical trials, genetic counseling, and coordinating cancer support groups. Within a multidisciplinary cancer care team, ONNs are often the most accessible member. The ONN serves as a liaison between the patient and physician, sharing patient concerns or managing treatment-induced symptoms.1 Patients are better prepared for physician visits with the support of the ONN, who provides education and resources promoting informed decision-making.25 Improved communication between the interand multi-disciplinary cancer team is realized by the potential to establish referral pathways to specialists, clinical trials, genetic counseling and testing services, the oncology dietitian, social work, and other support services. These referrals can reduce diagnostic and treatment delays, allowing for the establishment of best practices, and improved opportunities to reduce outmigration by keeping patients within the organization. 21 In the multiple functions that the ONN performs, a dichotomy of service focus can be seen as the ONN serves patients and the organization. As a member of the patient-centered care team, the ONN serves as the single point of contact, a care partner, for patients and families as they move through the cancer continuum. The ONN is responsible for promoting timely access to care and the synergy that provides for ‘‘smooth sailing’’ and positive patient outcomes. A bi-dimensional component is apparent as the navigator works to provide synergy with patients within the organization so the effect of ‘‘smooth

GUIDING PATIENTS THROUGH THE CONTINUUM OF CANCER CARE

sailing’’ is translated into seamless continuity of care that is evident to the cancer care team. Fillion et al1 have validated this concept in their Professional Navigation Framework. The framework maintains that the two dimensions the navigator serves are to facilitate continuity of care that is system-oriented and promoting patient and family empowerment that is patient-centered. 1 The original goal of navigation processes was to promote improved access to quality cancer care for the underserved. Today, the evolved navigation processes include incorporating a financial dimension: navigators are expected to promote patient satisfaction, impede outmigration, and enhance downstream revenue.

PROGRAM DEVELOPMENT The literature suggests that implementation of navigation processes and navigator intervention early in the disease trajectory contribute to achievement of desired outcomes, including reduced patient anxiety, facilitation of the patient’s movement through the maze of diagnostic testing, and promotion of informed decision-making.5 Although not evidenced in the literature, experienced and novice ONN identify difficulties with program development. Anecdotal reports from newly hired navigators highlight widespread and complex challenges associated with being held responsible and accountable for program development with little or no administrative vision or support, no policies in place, and no validated tools to define and promote success in the navigator role. Cost Effectiveness The challenge for all navigators, whether spoken or unspoken, is to demonstrate that this nonreimbursable role provides a financial benefit. Although it is a recurrent theme in the literature, there is a dearth of published data demonstrating the cost-effectiveness of navigation programs and navigator roles.5,9,21,25 The literature suggests that patient navigation enhances patient satisfaction, 4,8,18,21 which may in turn decrease outmigration and increase service utilization. Directors of cancer programs can quantify the return on investment of navigation services by tracking revenues and patient satisfaction specific to navigation services by developing appropriate metrics to measure services.5

111

Campbell and colleagues offer four principal measurable outcomes: 1) time from suspicion to diagnosis; 2) time to initiation of cancer treatment; 3) patient satisfaction; and 4) cost effectiveness.8 Additional metrics can include referrals leading to growth of ancillary or interdisciplinary services, navigation intervention related to a decrease in denied insurance and improved symptom management, or referrals to palliative care leading to decreased hospitalizations, unplanned readmissions, and length of stay. Although tracking metrics is time consuming, it defines metrics that add value or evaluate effectiveness of the navigation program. In a workshop sponsored by the Institute of Medicine’s National Cancer Policy Forum in 2011, some participants suggested that patient navigation is cost-effective: navigation is likely to reduce health care costs by preventing hospital admissions, errors, no-show rates, better adherence to treatment regimens and improved access to medical care, and thwarting costly health complications.28 Furthermore, by guiding patients through the health care system, patients spend less time in the hospital, and decrease programmatic costs.12 Program Scenarios Attributes of successful and problematic programs are exemplified in the following two scenarios: Scenario 1. Initial planning processes for a community cancer center breast program included input from a multidisciplinary planning team that carefully identified gaps and opportunities in designing the program. The essential component of physician support was evident in the collaboration with radiologists, surgeons, and oncologists. The patient identification process established at the outset of the program is initiated at the time of abnormal imaging findings. Members of the team were invested in the program’s success. The program is successful for the services it provides that promotes timely and efficient patient care and its ability to demonstrate downstream revenue and reduce outmigration. Scenario 2. At the same community cancer program, a decision was made to institute a general (non-diagnosis specific) navigation program. There was no preparatory gap analysis and one physician could be described as ‘‘somewhat committed’’ as a physician champion. The patient

112

L. MCMULLEN

identification process was modeled after the process devised for the breast center. A general navigator was hired, given office space and a telephone and instructed to navigate. Achieving programmatic success was a struggle. Use of the breast program’s navigation process was ineffective: initiation of navigation processes triggered by abnormal imaging exams seemed not to translate to the diagnoses other than breast cancer: radiologists report masses or nodules found on imaging studies to an ordering physician who informs patients of suspicious findings. The general navigator faced the task of establishing her own referral pattern and identifying prospective patients in the system. Based on the literature5,14 and the successes and complications exemplified in these two scenarios, critical steps can be identified for the development of successful navigation programs. Step 1: Needs identification. Design and implement a systematic exploration of need, interest, administrative and system support, and barriers to success. An initial gap analysis or process mapping evaluation can bring to light fragmentation in care delivery and opportunities for a navigation process and navigator to enhance the patient experience. Focus group methodology can be used to tap the experience-derived wisdom among the targeted patient population to identify gaps and needs from that perspective. Initial supporting data include information relating to outmigration, time between suspicion and diagnosis and time between diagnosis and initiation of definitive treatment, and comparisons to best practice data. Step 2: Identify and engage potential stakeholders. Identify, invite, include, and engage potential stakeholders in early programmatic planning. Although stakeholders vary among settings, key stakeholder groups include potential referring physicians, program directors, cancer care team members, and staff. From the stakeholder group, the level of physician buy-in can be determined, and potential champions throughout the system identified. Early beneficial relationship-building promotes establishment of effective communication pathways. Step 3: Establish a system planning committee. The planning committee includes representation of the stakeholder groups (nurses, administrators, physicians, and other specialists).

Committee structure and processes include members’ commitment to a meeting schedule and active participation. Goals for the committee will include: - identification of navigation program goals, objectives, and desired outcomes - metrics and demonstration of fiscal value and return on investment for the program - organizational structure, fit, and support of the navigation program - establishment of the patient identification process - development of navigator qualifications, expected competencies, and job description - avoiding overlap and duplication of care and services - development of policies and procedures - marketing and public relations strategies. Step 4: Navigator selection and hire. Because the navigator is integrated into the system and programmatic processes, she or he is introduced to the stakeholder, and referring groups. With navigator collaboration, systematic measures will be put in place to enhance awareness of the navigation program and the benefits to the system and patients of navigator intervention in preparation for program launch. Step 5: Program launch. Potential Program Challenges There is a paucity of discussion in the literature addressing challenges faced by navigators to surmounting barriers to care and the lack of tools or studies that evaluate the effectiveness of navigation programs in overcoming barriers to care.2 Navigators may not be able to eliminate patient treatment barriers without the support of the health care system that they serve.29 Campbell et al8 note that barriers are divided into financial and nonfinancial. The most common financial barriers identified were the lack of or insufficient medical insurance and the unavailability of transportation and/or childcare. Nonfinancial barriers were recognized as cultural issues, lack of knowledge, health illiteracy, and lack of trust of the health care system.8 It is difficult to determine what barriers are the most difficult to overcome. In an effort to locate resources and mobilize financial assistance, an essential undertaking is to create partnerships with community service providers and investigate

GUIDING PATIENTS THROUGH THE CONTINUUM OF CANCER CARE

available state and national support programs. There are several websites that offer a comprehensive list of resources categorized by type of need ranging from transportation, basic living expenses, childcare expenses, and home medical equipment to post-treatment financial needs and prescription expenses:  Cancer Care: http://www.cancercare.org/financial  Association of Community Cancer Centers 2012 Patient Assistance and Reimbursement Guide: http://www.accc-cancer.org/publications/ PatientAssistanceGuide.asp  My Cancer Advisor: http://www.patientresource. com/Financial_Resources.aspx Ultimately, there may not be a solution to some barriers. It is not uncommon to hear of navigators crossing professional boundaries and using their personal funds, cars, or even babysitting during provider appointments for the benefit of the patient. Addressing nonfinancial issues can be equally as challenging, although the resources available may not be as illusive. Once recognized, knowledge barriers can be addressed through the use of educational materials. An abundance of literature and educational tools can usually be found both on the Web and through pharmaceutical companies. A study by Spatz et al30 suggests that when working with vulnerable populations, having a patient navigator that is bilingual and bicultural helps to build trust and adherence to the care plan. While this is the ideal solution, it may not be readily attainable in a multi-cultural community; this might require three or four navigators depending on the population. In a patient navigation program reported by Schwaderer and Itano,31 priority was given to training the navigation staff in cultural diversity; a diversity training manual wasdeveloped specific to the cultures of the community. Dealing with health literacy and mistrust of the health care system requires acknowledging that the problem exists and working with the patient to develop trust and respect. Similar to overcoming financial barriers, navigators adapt to provide the best quality of care within their own available resources.

CASE STUDIES An example of an ONN intervention is with a 32-year-old woman. She is married and has

113

a 5-month-old child who she is breast feeding. She was on extended leave from her job with no medical insurance coverage. Her husband was employed. The patient came to the Emergency Department with hemoptysis and substernal chest pain. She thought she had pulled a muscle. Diagnostic work-up revealed a large mediastinal mass, suspicious for lymphoma. The ONN was called to the Emergency Department to see the patient. A relationship had been established between the navigator and the consulting pulmonologist, who initiated the navigation referral. Upon hearing the news of the mass, the patient and her husband were tearful and anxious. The ONN acknowledged their fears, provided emotional support and a calm reassuring explanation of the expected course for determining diagnosis. A CT-guided biopsy was scheduled for the next day. Current barriers were assessed and discussed with the couple. Because of the absence of medical insurance, the patient was referred to the hospital assistance program. The ONN arranged to meet the couple in the Interventional Radiology suite before the biopsy procedure scheduled for the following morning. Facilitation of care included appropriate appointments, tumor board presentation, and care team planning. Based on team planning efforts, the medical oncologist was prepared for the consultation with the patient and her husband. The ONN met with the couple after the consultation to discuss the treatment plan to treat her stage II Hodgkin’s lymphoma and provide support and education. The ONN encouraged the husband to obtain a Family Medical Leave Act (FMLA) application, discussed information regarding a second opinion, and referred them to Cleaning for a Reason (a house cleaning service for cancer patients), the Leukemia and Lymphoma Society, the Patient Advocate Foundation, and the LiveStrong Foundation for both educational and possible financial resources. Fertility preservation processes delayed the start of treatment by 2 weeks. The patient was admitted to the hospital for her first chemotherapy treatment because of absence of medical insurance. During hospitalization, the ONN monitored the patient and served as a liaison between the inpatient and outpatient care teams. After the first treatment, the ONN maintained contact with the patient and relayed relevant concerns to the cancer care team. As the patient prepared for the second

114

L. MCMULLEN

treatment, the high level of anxiety that surrounded the diagnosis was replaced with a notable display of self-efficacy by the couple. Financial support had been obtained, fertility preservation was being paid for by family members, and monetary support for child care through the Patient Advocate Foundation was approved. At this point, the navigator allowed the patient and her husband to move forward independently; however, she was always available to problem-solve should issues arise. Because the cancer program at this organization did not have a survivorship navigator or survivorship program, the patient remained on the ONN’s case load (Fig. 1). A second example of an ONN intervention is a 70-year-old woman with head and neck cancer. The patient was diagnosed by the ENT physician then referred to the navigator. The patient was blind with a service dog who accompanied her everywhere, lived alone, with the closest relatives living out of state. She was on Medicaid. The navigator received the referral by phone and called the patient to set up a medical oncology consultation appointment. Staging scans were ordered by the referring physician to expedite the intake process for this patient. Records were requested. On the day of the consultation, the navigator accompanied the patient, who had been transported by a neighbor, to her appointments and met with the patient afterward to insure that she understood the plan of care, which included chemotherapy and a referral to radiation therapy. To avoid a separate trip to the cancer center, the navigator arranged for an immediate consultation appointment with the radiation oncologist and worked with the radiation therapy staff to facilitate a transfer of records. Following the consultations, the patient requested that the navigator call her family to review the treatment plan and goals of care. This patient was identified as a high-risk patient because she lived alone, was blind, and would be undergoing a difficult treatment regimen that often leads to dehydration, odynophagia, and/or dysphagia. Additionally, several barriers were identified during the intake process. The patient’s neighbor agreed to bring her to chemotherapy appointments, but the patient would need daily transportation to radiation therapy; she would need someone to care for her dog while she was at the cancer center getting treatments; she was a probable candidate for a G-tube for feedings because of the radiation treatment field, but it

would be a challenge to teach her to self-feed due to her blindness; she was already on Government assistance with no financial resources. Referrals were made to social work and the oncology dietitian. The navigation process for this patient proved to be a challenge in many ways. Transportation assistance was arranged through Logisticare, a Medicaid non-emergency transportation broker. Although the navigator offered to walk the dog while the patient was in the clinic for treatment, this was against hospital policy; a family member of one of the nurses offered to make daily trips to take on the task. The navigator also contacted the serviceeye dog agency that originally supplied the dog to the patient to inquire about possible kenneling of the dog in a proactive attempt to be prepared if the patient became too ill or needed to be hospitalized. Referrals were made to Meals-on-Wheels and the community health department. The navigator called the patient weekly to monitor nutritional status and treatment side effects. Despite efforts to keep the patient in her home, she did eventually need to be hospitalized as feeding with a G-tube was not feasible. The patient’s dog was picked up and kenneled and a family member did fly in to act as caregiver during and after hospitalization. Despite the multiple challenges in navigating this patient, she did finish treatment and was transitioned into follow-up care.

SURVIVORSHIP AND TRANSITIONAL CARE Cancer survivorship is a challenge beyond its relationship to navigation and is recognized as an integral part of a patient-centered cancer care plan. The literature review did not reveal navigation programs that involved transition to a survivorship phase. There are survivorship programs, many functioning with an Advanced Practice Nurse as the key clinician. The literature indicates a general lack of knowledge, funding, and time dedicated to the implementation of survivorship programs.32 An innovative solution to providing survivorship care is at the Memorial Hermann Healthcare System in Texas, a collaborative effort between community health workers and ONNs. In response to shortened stays in the hospital, community health workers who are familiar with the cultural traditions of the community are being trained as resources for cancer survivors. The community

GUIDING PATIENTS THROUGH THE CONTINUUM OF CANCER CARE

Coordination of care by ONN

Patient referred to navigator ONN becomes principal point of contact for patient

Consultation /Post consultation with

Appointment made for

medical oncologist:

second opinion

Appointment

Review treatment plan

Slides/medical imaging

made for

Assess knowledge gaps

discs requested for

medical imaging

Provide resources

second opinion

115

to complete staging Patient referrals:

Pertinent records

Barriers Hospital assistance

sent to referring

assessed Leukemia & Lymphoma

physician

Emotional Society® support provided Patient Advocate Medical Foundation oncologist Fertility preservation consultation

Patient begins treatment: Ongoing assessment and support

Livestrong

Frequent follow-up and

Foundation

communication with the

appointment Case prepared Oncology Social worker

multidisciplinary team as needed

for tumor board Oncology Dietitian treatment plan

FIGURE 1. Diagnostic ONN intervention.

health workers help to transition patients by supporting survivors in their homes.27 Although this model is still in the early stages of development, a parallel can be seen between the program at Memorial Hermann and the role of a Transitional Care Nurse (TCN). Similar to the ONN, the TCN demonstrates an attempt to provide continuity and coordination of patient care for high-risk patient populations. The role of the TCN was introduced in 1981 by a group of advanced practice nurses from the University of Pennsylvania and is based on the Transitional Care Model (TCM).29-33 The TCM is a nurse-led, multidisciplinary care model that serves adult hospitalized patients with a goal of preventing complications and rehospitalization through comprehensive discharge planning and in-home follow-up care. Ultimately, the TCM focuses on improving long-term, post discharge outcomes in chronically ill, high-risk elderly patients.34 The TCN is a master’s prepared nurse who is introduced into the care trajectory in the acute setting within 24 hours of patients being enrolled in the program. The patient is assessed as an inpatient then followed into the home setting by the TCN

within 24 to 48 hours after discharge. Additionally, the TCN accompanies the patient to the first post-discharge physician visit to assure clear communication of the treatment plan and patient care goals. Finally, over a 1- to 3-month time frame, the TCN transitions the patient and caregiver toward independence in disease self-management by encouraging the development of knowledge and resources to interrupt patterns of Emergency Department use and re-hospitalization (see Fig. 2).35 A hallmark of the model is to optimize patient outcomes during and following an acute episode of illness. The goal of the model is not to deliver care management but, similar to the ONN role, to empower patients with knowledge and resources through education and communication to prevent re-hospitalization. Organizational benefits are realized as well. An evaluation of the TCM, with a study focus on heart failure, showed a 30% to 50% reduction in re-hospitalization and a savings of health care costs of approximately $4,000 per patient 5 to 12 months after discharge.36 In a descriptive, non-experimental study by Watkins et al,37 the TCN is replaced with a transition navigator who is a social worker. The program was called ‘‘Hospital to Home.’’ The intent of the

116

L. MCMULLEN

PATIENT admitted to a hospital within the past 24 - 48 hrs

TCM Nurse visits patient in hospital within 24 hrs of enrollment.

TCM Nurse conducts comprehensive assessment of patient’s and family caregiver’s goals and needs, and initiates collaboration with patient’s physicians.

TCM Nurse visits the patient daily during hospitalization.

Patient is evaluated based on the TCM screening and risk assessment.

Patient consent obtained

TCM Nurse collaborates with members of the health care team to design and coordinate evidence-based transitional care plan.

TCM Nurse visits patient transitioned from hospital to home within 24 hrs.

Patient eligible?

NO

YES

Accompanies patient to at least initial primary care clinician visits.

Seven days per week availability (includes at least weekly home visits during first month, and at least weekly telephone outreach throughout intervention).

Standard Discharge Plan Makes referrals for health care or community support as needed.

Promotes transition to primary care clinicians.

TCM Nurse implements care plan, continually reassessing patient’s status and the plan with the patient, family caregiver and primary care clinicians. Average length of care is 2 months

PATIENT transitioned from TCM program: a summary of patient’s goals, progress and continuing needs is sent to patient, family caregivers and primary care clinicians within 48 hrs.

FIGURE 2. Transitional care model (TCM). study was to improve quality of life, patient outcome, and prevent re-hospitalization. The transition navigator is a non-reimbursable service thatconcentrates on the psychosocial problems associated with care transitions as well as individual and medical needs. A focus of the transition navigator that differs from the TCN is assessing and implementing community services to meet barriers to successful home transition, such as transportation, shopping, light housekeeping, meal preparation, and laundry; components that are similar to the role of the ONN. Study results correlated cost savings with decreased readmissions and an improvement in quality-of-life scores.36

CONCLUSION The role of ONN is immensely rewarding; when the process works, the success is apparent for the patient and the delivery system. ONNs work to improve fragmented system processes and contend they provide the glue that holds patients’ lives together as they deal with the devastation of a cancer diagnosis and uncertainties. The role

of the ONN is one of the few roles in nursing in which a professional nurse is accountable for and invested in providing patient-centered care throughout a disease trajectory. Navigation processes and roles are evolving as the health care system changes. The foundational concepts and evaluative tools needed to validate and promote navigation are being developed. The National Cancer Institutes National Comprehensive Cancer Centers’ Navigation Matrix identifies 16 core measures for setting goals and monitoring progress of navigation programs.38 Nurse navigator competencies are being developed by the Oncology Nursing Society to reflect the current knowledge base and scope of practice necessary for ONN’s to function in the role. Having validated competencies will provide the impetus needed to design and develop an educational tool to ensure that ONNs have the knowledge and skill set needed to function effectively in their roles. Additional research needs to be undertaken to demonstrate clinical efficacy across all cancer diagnosis and cost effectiveness metrics of the navigation processes.

GUIDING PATIENTS THROUGH THE CONTINUUM OF CANCER CARE

117

REFERENCES 1. Fillion L, Cook S, Veillette A, et al. Professional navigation framework: elaboration and validation in a Canadian context. Oncol Nurs Forum 2012;39:E58-E68. 2. Koch C, Nelson J, Cook P. Evaluation of a patient navigation program. Clin J Oncol Nurs 2011;15:41-48. 3. Freeman H. A model patient navigation program. Oncology Issues 2004;19:44-46. 4. The American College of Surgeons. Cancer program standards 2012: ensuring patient-centered care. Commission on Cancer. Available at: http://www.facs.org/cancer/coc/ programstandards2012.pdf. (accessed July 17, 2012). 5. Wilcox B, Bruce S. A ‘‘win-win’’ for all involved. Oncol Nurs Forum 2010;37:21-25. 6. Pedersen A, Hack T. Pilots of oncology health care: a concept analysis of the patient navigator role. Oncol Nurs Forum 2010;37:55-60. 7. Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer 2005;104:848-855. 8. Campbell C, Craig J, Eggert J, et al. Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncol Nurs Forum 2010;37:61-68. 9. Hunnibell L, Rose M, Connery D. Using nurse navigation to improve timeliness of lung cancer care at a Veterans Hospital. Clin J Oncol Nurs 2012;16:29-36. 10. Swanson J, Koch L. The role of the oncology nurse navigator in distress management of adult in-patients with cancer: a retrospective study. Oncol Nurs Forum 2010;37:69-75. 11. Thygessen M, Pedersen B, Kragstrup J, et al. Benefits and challenges perceived by patients with cancer when offered a nurse navigator. J Natl Med Assoc 2008;100:278-284. 12. Fillion L, Cook S, Goupil R, et al. Professional patient navigation in head and neck cancer. Semin Oncol Nurs 2009;25:212-221. 13. Carroll J, Humiston S, Meldrum S, et al. Patients’ experiences with navigation for cancer care. Patient Educ Couns 2010;80:241-247. 14. Seek A, Hogle W. Navigating the healthcare system for patients with lung cancer. Clin J Oncol Nurs 2007;11:81-85. 15. Parker V, Clark J, Leyson J, et al. Patient navigation: development of a protocol for describing what navigators do. Health Serv Res 2010;45:514-531. 16. Walsh J, Young J, Harrison J, et al. What is important in cancer care coordination? A qualitative investigation. Eur J Cancer Care (Engl) 2011;20:220-227. 17. Christie J, Itzkowitz S, Lihau-Nkanza I, et al. A randomized controlled trial using patient navigation to increase colonoscopy screening among low-income minorities. J Natl Med Assoc 2008;100:278-284. 18. Hook A, Ware L, Siler B, et al. Breast cancer navigation and patient satisfaction: exploring a community-based patient navigation model in a rural setting. Oncol Nurs Forum 2012;39:379-385. 19. Doll R, Barroetavena M, Ellwood A, et al. The cancer care navigator: toward a conceptual framework for a new role in oncology. Oncol Exchange 2007;6:28-35. 20. Case M. Oncology nurse navigator: Ensuring safe passage. Clin J Oncol Nurs 2010;15:33-40.

21. Curley M. Patient-nurse synergy: optimizing patients’ outcomes. Am J Crit Care 1998;7:64-72. 22. Oncology Nursing Society, 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. Available at: http://www.ons. org/Publications/Positions/Navigation (accessed July 5, 2012). 23. Darnell J. Patient navigation: a call to action. Soc Work 2007;52:81-84. 24. Fillon L, de Serres M, Lapointe-Goupil, et al. Implementing the role of the patient-navigator nurse at a university hospital centre. Can Oncol Nurs J 2006;16:5-17. 25. Desimini E, Kennedy J, Helsley M, et al. Making the case for nurse navigators: benefits, outcomes, and return on investment. Available at: http://accc-cancer.org/oncology_issues/ articles/SepOct2011/SO11-Desimini.pdf (accessed July 5, 2012). 26. Gilbert J, 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. 27. Special issue: oncology nursing. NCI Cancer Bulletin 2012;9:1-5. Available at: http://www.cancer.gov.ncicancerbulletin/ 072412/page4 (accessed July 27, 2012). 28. Balogh E, Ganz P, Murphy S, et al. Patient-centered cancer treatment planning: Improving the quality of oncology care. Summary of an Institute of Medicine workshop. Oncologist 2011;16:1800-1805. 29. Fiscella K, Ransom S, Jean-Pierre P, et al. Patient-reported outcome measures suitable to assessment of patient navigation. Cancer 2011;117(suppl 15):3601-3615. 30. Spatz E, Phipps M, Wang O. Expanding the safety net of specialty care for the uninsured: a case study. Health Serv Res 2012;47:344-362. 31. Schwaderer K, Itano J. Bridging the healthcare divide with patient navigation: development of a research program to address disparities. Clin J Oncol Nurs 2007;11:633-639. 32. Irwin M, Klemp J, Glennon C, et al. Oncology nurses perspectives on the state of survivorship care: Current practice and barriers to implementation. Oncol Nurs Forum 2011;38: E11-E19. 33. Naylor M. A decade of transitional care research with vulnerable elders. J Cardiovasc Nurs 2000;14:1-14. 34. University of Pennsylvania School of Nursing. Transitional care model: when you or a loved one requires care. 2008-2009. Available at: http://www.transitionalcare.info/ index.html (accessed July 5, 2012). 35. University of Pennsylvania School of Nursing. Transitional care model. ND;1-16. Available at: http://www. transitionalcare.info (accessed July 5, 2012). 36. Coalition for Evidence-Based Policy. Social programs that work: transitional care model. Available at: http:// evidencebasedprograms.org/wordpress/wp-content/uploads// TransitionalCareModelTT.pdf (accessed July 5, 2012). 37. Watkins L, Hall C, Kring D. Hospital to home: a transition program for frail older adults. Prof Case Manag 2012;17:117-123. 38. National Cancer Institute Community Cancer Centers Program Navigation Matrix Tool. Available at: http://ncccp. cancer.gov/files/NCCCP_Nav_Matrix_Final_Approved_20110714. pdf (accessed August 1, 2012).