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A report from the acs patient navigation working group on survivorship navigation
Article first published online: 20 JUL 2011
Copyright © 2011 American Cancer Society
Supplement: National Patient Navigation Leadership Summit (NPNLS): Measuring the Impact and Potential of Patient Navigation, Supplement to Cancer
Volume 117, Issue Supplement 15, pages 3573–3582, 1 August 2011
How to Cite
Pratt-Chapman, M., Simon, M. A., Patterson, A. K., Risendal, B. C. and Patierno, S. (2011), Survivorship navigation outcome measures. Cancer, 117: 3573–3582. doi: 10.1002/cncr.26261
M.P.-C. thanks Dr. Diana Jeffery for her input in formative discussions that helped establish the theoretical framework for the Pratt-Chapman–Patierno Adapted Quality of Life Model Applied to Cancer Survivors.
The articles in this supplement are based on presentations at the “National Patient Navigator Leadership Summit”; March 23-24, 2010; Atlanta, GA.
The opinions or views expressed in this supplement are those of the authors, and do not necessarily reflect the opinions or recommendations of the publisher, the editors, the University of Illinois at Chicago, the American Cancer Society, or the Ralph Lauren Center for Cancer Care and Prevention.
National Patient Navigator Leadership Summit (NPNLS): Measuring the Impact and Potential of Patient Navigation, Supplement to Cancer.
- Issue published online: 20 JUL 2011
- Article first published online: 20 JUL 2011
- Manuscript Accepted: 12 APR 2011
- Manuscript Received: 24 FEB 2011
Vol. 118, Issue 21, 5450, Article first published online: 20 MAR 2012
- patient navigation;
- outcome measures
Survivorship navigation is a relatively new concept in the field of patient navigation but an important one. This article highlights the essential functions of the survivorship navigator and defines core outcomes and measures for navigation in the survivorship period. Barriers to access to care experienced by patients during active cancer treatment can continue into the post-treatment period, affecting quality follow-up care for survivors. These barriers to care can be particularly acute for non-English speakers, immigrants, the uninsured, the underinsured, and other vulnerable populations. The survivorship navigator can help reduce barriers and facilitate access to survivorship care and services through communication and information exchange for patients. Survivorship navigation may improve appropriate health care utilization through education and care coordination, potentially improving health outcomes and quality of life of survivors while reducing cost to the health care system. Survivorship navigators can also educate survivors on how to improve their overall wellness, thereby directly impacting the health of a growing population of cancer survivors. Cancer 2011;117(15 suppl):3573–82. © 2011 American Cancer Society.
Today, more than 11 million cancer survivors live in the United States, and there are 28 million worldwide. As the war on cancer has accomplished great milestones in decreasing mortality and morbidity from the disease, the aftercare of cancer survivors continues to be a burgeoning area of cancer care. The period directly after active cancer treatment can be difficult for some survivors. Physical, psychosocial, and emotional issues that occur during initial diagnosis and treatment may result in lingering changes to the life of the cancer survivor. Less frequent contact with the treatment team, anxiety about the possibility of recurrence, difficulty adjusting to a “new normal,” and waning social supports can contribute to psychological distress during this transition period. Survivors may also experience residual pain after surgery and other long-term and late effects of treatment. Even survivors who do not experience acute psychological distress or physical pain often want to know how to optimize their health after having cancer.
In response to a rapidly growing cancer survivor population and the Institute of Medicine's call to action in its 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition,”1 there has been increased attention to the needs of post-treatment cancer survivors. Some cancer survivors experience significant barriers to optimal survivorship care, including a fragmented and poorly coordinated delivery system; lack of awareness of the late and long-term effects of cancer and its treatment; limited knowledge of how to maximize health outcomes; and barriers to patient-provider communication.1
Fragmented delivery system: Cancer survivors face challenges with symptom management, disability, emotional distress, complex medication regimens, lifestyle adjustments, and ongoing medical care. Cancer patients often depend on multiple specialists to deliver their care, requiring coordination of care between providers. During the post-treatment period, coordination between specialists and primary care providers is critical. Studies have indicated that patients followed primarily by their oncologist may not receive adequate preventive services while patients followed primarily by their primary care physician may experience sub-standard surveillance.2, 3 This complex and fragmented health care delivery system can result in disparities in surveillance practices based on race/ethnicity and income.4, 5 Difficulty navigating such a complex medical system is exacerbated for non-English speakers, as well as uninsured or underinsured individuals.
Lack of awareness of late effects and how to maximize health outcomes: To engage appropriate survivor care, patients must understand their medical history, their heightened health risks, and ways to ameliorate those risks. Nonetheless, many patients do not receive basic information about their cancer treatment or the corresponding risks for late effects. As a result, breast cancer patients report knowing little about lymphedema before developing complications;6 approximately half of cancer patients who are of childbearing age do not receive appropriate fertility counseling;7 and less than a quarter of colorectal cancer survivors know what to look for as an indicator of recurrence.8
Barriers to communication: During the post-treatment period, patients often do not receive the information they would like to receive or advice that could impact health outcomes. Most breast cancer survivors want information about nutrition, pain, and dealing with emotional/family difficulties.9 Some cancer survivors are dissatisfied with care provided by their oncologists because they perceive them as lacking in the provision of supportive care, including care for depression, fear of recurrence, chronic pain, infertility, sexual dysfunction, relationship difficulties, financial or workplace issues, and noncancer health problems.10 Providers often focus on detecting recurring disease and may spend little time on patient education or psychosocial support.11 Barriers to communication are compounded for patients with limited literacy skills.
No single solution will alleviate the barriers inherent in the complex US health care system. However, patient navigation has shown promise in reducing delays to diagnostic resolution and treatment commencement for cancer patients and may benefit patients in the post-treatment period by overcoming known structural and psychosocial barriers to accessing survivor care.12, 13 Most recently, Dr. Harold Freeman, founder of the concept of patient navigation, and others have recognized the opportunity and need to extend the practice of navigation to the survivorship period in response to the expectations and needs of an increasing number of cancer survivors.
The purpose of this article is to highlight the essential functions of the survivorship navigator and to define core outcomes and measures for navigation in the survivorship period. We believe a survivorship navigator can facilitate access to survivorship care and timely and appropriate utilization of survivorship services through communication and information exchange for patients. Specifically, the survivorship navigator can reduce fragmentation in the health care delivery system by removing concrete barriers to ongoing care (ie, transportation, financial, etc.); tracking adherence to clinical follow-up recommendations; linking survivors to a medical home and specialty survivorship care; coordinating care among various medical service providers to reduce duplication of services; and ensuring patients do not get lost to follow-up. The navigator can heighten survivor awareness of late and long-term effects by educating patients about their prior medical history and risk profile. Finally, the navigator can improve holistic care by facilitating patient/provider communication; identifying psychosocial barriers and providing emotional support; and linking patients to appropriate supportive care and community resources. Collectively, these navigator actions can improve quality of life (QOL) for the cancer survivor.
Survivorship navigation, like patient navigation in general, suffers from a lack of standardization, which makes the establishment of common metrics a challenge. The role of the navigator in relation to health care professionals such as nurses and social workers remains a topic of heavy debate. The authors believe that the credentials of the navigator should correlate directly with the program goals of the institution or organization, which may vary widely. This article summarizes the results and conclusions of the Survivorship Working Group (SWG) of the National Patient Navigator Leadership Summit. It intends to provide guidance on the role and activities of the survivorship navigator as well as measurement approaches for programs to consider given the specific goals of their unique program.
The Survivorship Working Group (SWG)
The SWG, consisting of 8 national leaders in the area of cancer survivorship and patient navigation, initially convened at the American Cancer Society's National Patient Navigator Leadership Summit in March 2010. Experts on the SWG included a cancer institute director, a survivorship program director, leadership at nonprofit cancer support organizations, leadership of state comprehensive cancer coalitions, an academic physician expert in patient navigation research and community engagement, and faculty in higher education with expertise in cancer survivorship research. The group was chaired by the executive director of The George Washington Cancer Institute (S.P.) and met for 2 days in Atlanta with a brief follow-up meeting in Washington, DC.
The SWG identified optimal outcomes of survivorship navigation at the Summit, building on a pre-existing theoretical framework created by The George Washington Cancer Institute's Division of Cancer Survivorship. Five of the 8 workgroup members subsequently met in June 2010 to prioritize outcomes and discuss potential ways to measure those outcomes. This smaller subset of the SWG identified relevant tools to measure selected outcomes and collaboratively constructed this article via email exchange in the months that followed.
Survivorship Navigation: Purpose and Role
The purpose of survivorship navigation is to help mitigate barriers survivors may experience in accessing survivorship services and attaining high quality of life. As Ferrell et al showed in their Quality of Life Model Applied to Cancer Survivors,14 quality of life includes physical, psychological, social, and spiritual well-being. The survivorship navigator can aid in survivors' achievement of optimal quality of life by assessing and responding to the intra-individual and extra-individual factors that facilitate or present obstacles to high quality of life, as depicted in the Pratt-Chapman–Patierno Adapted Quality of Life Model Applied to Cancer Survivors (Fig. 1). Intra-individual factors are intrinsic factors that affect disease activity or impact, such as specific type of cancer; lifestyle and behavior; psychosocial attributes and coping (positive affect, emotional vigor, prayer, locus of control, cognitive adaptation to one's situation, confidant, peer support groups, etc.); communication style; power/powerlessness and self-efficacy; acculturation; sex; and age. Extra-individual factors are intervening factors that are extrinsic to the survivor that influence disease activity or impact, such as treatment modality (surgery, radiation, chemotherapy, hormone therapy, etc.); medications and other therapeutic regimens; external supports (special equipment and devices); and physical and social environment (access to transportation, health insurance, access to medical care, laws and regulations, discrimination, stigma, and stereotyping).
The Adapted Quality of Life Model Applied to Cancer Survivors draws from 3 previously established models: the Quality of Life Model Applied to Cancer Survivors (Ferrell et al),14 the Model of the Disablement Process (Verbrugge and Jette),15 and an anthropological model of Culture-Brokering (Jezewski).16 Ferrell et al's QOL model has received significant attention from the cancer survivorship research community and is cited in the literature 182 times. Our adapted model highlights the importance of intra- and extra-individual factors adapted from Verbrugge and Jette's Model of the Disablement Process. The examples of factors listed above are not exhaustive but provide some examples of impinging and supporting factors affecting the survivor.
The survivorship navigator can assist cancer survivors by assessing intra- and extra-individual barriers that prevent attainment of high QOL and by mitigating those barriers to improve survivor outcomes. The navigator effectively acts as a “broker” between a particular culture (that of the survivor's community) and the cancer care delivery system. Patient navigation, like culture brokering, involves conflict resolution and problem solving. Knowledge of both the survivor's cultural system and the health care delivery system is crucial for effective coordination, negotiation, and mediation of survivor needs.
RESULTS AND DISCUSSION
The SWG had a divided discussion over the importance of clinical outcomes for survivorship navigation. Clinical outcomes are arguably the most critical outcome of navigation as a field, especially in the early part of the cancer continuum given the potential for navigation to impact stage of diagnosis and timeliness of access to quality treatment and therefore survival outcomes. However, the impact of survivorship navigation on clinical outcomes for patients is less clear.
Important clinical outcomes for cancer survivorship as a field include symptom management, physical functioning, and mental health of cancer survivors. Survivorship care may also include management of other chronic, comorbid conditions, or coordination of specialty care and preventive medicine. It is difficult to determine whether navigation itself would drive clinical improvements in these areas. Navigators can assess barriers to appropriate symptom management and refer survivors to appropriate resources to optimize physical functioning and mental health; remove barriers and facilitate access to services; assist with care coordination; provide general survivor education; and empower survivors to optimize time with clinicians and seek appropriate follow-up care. Through navigation, clinician time is freed up to focus on clinical assessment and care and symptom management. However, the extent to which survivors' clinical outcomes improve is largely contingent on the availability of survivorship services, which are not currently a widely available standard of care. Therefore, assessing effectiveness of the survivorship navigator based on clinical outcomes is likely to be unrealistic at this point in time.
Salient clinical outcomes across the disease trajectory are described in detail in other articles included in this supplement (eg, Diagnosis and Treatment), along with appropriate measures and indicators that can be utilized.
Health Care Utilization Outcomes
The SWG agreed that Health Care Utilization Outcomes such as access to care, adherence to clinical follow-up recommendations, timely utilization of appropriate survivorship care, and continuity of care were the most important metrics by which to assess the effectiveness of survivorship navigation. Given the potential for patient loss to follow-up within the fragmented health care delivery system, empowering patients to identify and access appropriate follow-up care could be the largest contribution of survivorship navigation. Health care utilization also directly impacts clinical outcomes.
Finally, lack of a medical home is a critical barrier to optimal survivorship; the establishment of a medical home for the patient should be a core function of survivorship navigation. Although patients may have access to oncology care during active treatment, the return to the primary care team is an important transition for the survivor. Currently, many survivors may not easily or may actively elect not to transition back to their primary care providers. In fact, it is common for survivors to continue to utilize specialty and oncology team members for primary care. Alternatively, some survivors may not have had a regular source of medical care prior to their diagnosis, so they continue to rely on cancer specialty services as their usual source of care. Use of highly trained specialists may cause backlogs in the care system and result in greater medical cost to the patient and the care system. Simply asking a cancer survivor if he or she has seen a primary care provider in the past year can provide the navigator with an opportunity to assist in linking him or her to an appropriate provider.
As cancer survivorship care plans continue to be developed and implemented that outline clinical recommendations for follow-up, the role of the navigator in ensuring understanding of the plan and assisting in addressing barriers to adherence should be considered. Key elements of the survivorship care plan include detailed diagnostic information (date, type, location, stage, histology); a summary of cancer treatments (surgery, chemotherapy/biotherapy, radiation, hormonal) as well as providers' names and institution contact information; specific recommendations for ongoing care (surveillance, follow-up care schedule, and management of long-term and late effects) including which providers to see and when; and health promotion information (smoking cessation, healthy eating, exercise, sun-protective behaviors). The survivorship care plan can provide a roadmap for navigators to educate patients about health risks and clinical recommendations for follow-up. This can help the navigator promote adherence to the recommended schedule of care. Examples of survivorship care plans include the Memorial Sloan-Kettering Cancer Center Care Plan,17 the ASCO Care Plan,18 the Journey Forward Care Plan Builder,19 and the LIVESTRONG Care Plan.20
There are a multitude of supplemental patient-reported outcomes (PROs) that might be measured to assess the impact of patient navigation (see the article on patient-reported outcomes on pages 000-000). The most important PROs for survivorship navigation include patient-reported Quality of Life (QOL), Survivor Self-Efficacy and Activation, Survivor Satisfaction with Care and Navigation, Health Knowledge and Literacy, and Healthy Behaviors (see the article on pages 000-000 for a complete list of measures).
A partial list of measures that are relevant to survivorship navigation are included here: the Patient-Reported Outcomes Measurement Information System (PROMIS) and Functional Assessment of Chronic Illness Therapy (FACIT) have measures to assess QOL, as does the Medical Outcomes Study (MOS) core survey.21 Brad Zebrack's Impact of Cancer Scale Tool22 assesses 10 domains of patients' lives that seem to be affected by cancer (Physical: Health Awareness; Physical: Body Changes; Psychological: Positive Self-Evaluation; Psychological: Negative Self-Evaluation; Existential: Positive Outlook; Existential: Negative Outlook; Social: Life Interferences; Social: Value of Relationships; Meaning of Cancer; and Health Worry). However, the direct impact of navigation on QOL, given the numerous factors that impact QOL, remains difficult to measure. Survivor Self-Efficacy and Activation might be measured through the use of the Communication and Attitudinal Self-Efficacy-Cancer (CASE-C) instrument, the Impact of Cancer Scale, or the Patient Activation Measure (PAM).22-24 Survivorship Satisfaction with Care might be measured through the Consumer Assessment of Healthcare Providers and Systems (CAHPS-Cancer); Patient Navigation Research Program (PNRP) satisfaction tools currently being validated; or the recently validated Patient Satisfaction with Cancer-Related Care (PSCC).25 Assessment of Survivor Satisfaction with Navigation may be performed using PNRP satisfaction instruments currently being validated that consider the removal of instrumental/logistical barriers as well as the patient's report of interpersonal/educational factors in the navigation experience.
CAHPS has a Health Literacy supplemental module to assess provider-patient communication and patient perception of health information conveyed.26 Factors that might attenuate effective transfer of medical knowledge might include the level of cultural competence of the entire clinical care team; the provision of information in the survivor's first language and at an appropriate reading level; and the trust or alliance established between the survivor and the medical care team, including the navigator.
Table 1 summarizes survivorship navigation activities and measures that organizations can select and further customize based on the specific goals of the institution. These activities can be performed by any professional navigator embedded in a care system, but some activities may be difficult for a volunteer navigator or a community-based navigator operating outside of a clinical environment.
|Outcome||Navigator Activities||How to Measure|
|Health care utilization: access to clinical care||Remove concrete barriers to care||Barriers checklist with individualized patient plan to address barriers|
|Track adherence to clinical follow-up recommendations||Medical records Survivorship care plans Track baseline and postnavigation no-show rates CDC/NAMCS: Systematic data collection from the physician or office staff on an encounter form obtained on patients' symptoms, physicians' diagnoses, and medications ordered or provided. Information should include demographics, services provided, diagnostic procedures, patient management, and treatment plan. Tracking log: Ask patients if they have complied with specific follow-up recommendations (Y/N)|
|Connect survivor to usual source of care/medical home||CDC/NHIS: eg, At any time in the PAST 2 WEEKS/12 MONTHS did you CHANGE the place(s) to which you USUALLY go for health care? Tracking log: Ask patient if they have a usual source of care (Y/N)|
|Connect patients to specialized survivorship care when possible||Tracking log: Ask patient if they access a survivorship clinic or follow-up care (Y/N)|
|Coordinate care amongst various providers to reduce duplication of services||Medical records Clinic record Survivorship care plan documentation Tracking log: Did patient follow up on referral? (Y/N)|
|Ensure patients do not get lost to follow-up||Clinic record Tracking log|
|Health care utilization: awareness of late and long-term effects||Provide survivors general information about long-term and late effects, customized to cancer type and treatment modality when possible||Tracking log: Information provided? (Y/N)|
|Empower patients to request a survivorship care plan or adhere to their plan if they have one||Did navigator provide information on survivorship care plan? (Y/N) Patient receives survivorship care plan documented in the medical records|
|Health care utilization: access to supportive care||Assess for distress||NCCN Distress Thermometer|
|Refer to social work, psychology, or psychiatry as indicated||Tracking log: Did survivor follow up on referral recommendations? (Y/N)|
|Refer and coordinate appointments with subspecialists to address long-term or late effects (eg, functional ability, fertility concerns, pain)|
|PRO: quality of life||Assess QOL; provide emotional support||PROMIS FACIT Impact of Cancer Scale|
|Link patients to appropriate community resources||Barriers checklist with individualized patient plan to address barriers|
|Provide information on support groups and peer support programs||Tracking log: Information provided? (Y/N)|
|Assess social, financial, and practical facilitators and barriers to QOL||PNRP Barriers Checklist APOSW Survivorship Clinic Annual Questionnaire|
|Assist with paperwork needed to access insurance, public safety net programs, and health care system||Tracking log: Does patient have health insurance? (Y/N); Did navigator assist with accessing safety net programs? (Y/N)|
|Provide information to address employment, financial, or other practical concerns||Tracking log: Did navigator provide information to assist with practical concerns? (Y/N)|
|PRO: self-efficacy and activation||Empower survivors through education about long-term and late effects||CASE-C Impact of Cancer Scales PAM|
|Coach on interaction with medical team to help survivors negotiate care|
|Empower patients to navigate the health system on their own through education and support|
|PRO: satisfaction with care and navigation||Provide emotional support, resource referral, and care coordination||Patient Satisfaction Scales: PNRP Satisfaction Tool CAHPS-Cancer PSCC Tracking log: Referral (Y/N); type of referral|
|Consider language and culture when making referral recommendations|
|Provide emotional support and information on spiritual support communities and programs|
|PRO: health knowledge and literacy||Educate survivors about their cancer and treatment history, as well as long-term and late effects||CAHPS-Health Literacy module|
|Coach on interaction with medical team to help survivors understand their medical history and plan of care|
|PRO: healthy behaviors||Educate survivors on preventive behaviors and ways to optimize wellness||Survivorship care plan: document behavioral recommendations Patient interview: compare baseline behaviors to changes post-navigation|
Customizing Measures to Fit Your Program
The measures suggested above are not exhaustive. Ultimately, survivorship navigation must be measured against the specific goals of a particular program or organization. For example, The George Washington University Cancer Institute (GWCI) is currently piloting 2 models of survivorship navigation. In the first model, a nurse-credentialed survivorship navigator operates outside of a clinic and is available to all adult-onset cancer patients completing cancer treatment in the District of Columbia. Given the dearth of post-treatment assistance for adult-onset cancer survivors in the District of Columbia, the goals of the navigator are to reach as many survivors as possible, educate them on the need for clinical follow-up, provide information on the importance of survivorship care planning, and provide ongoing education about survivorship issues using evidence-based programs. In the second model, a social work–credentialed navigator is integrated into a comprehensive, long-term clinic for adult survivors of pediatric cancer. The goal of this navigator is to provide highly individualized assistance to improve the quality of life of pediatric cancer survivors by reducing barriers to obtaining quality follow-up care; assisting with care coordination; referring to specialty care, supportive care, and community resources; and helping survivors adhere to ongoing clinical recommendations for follow-up and health promotion.
In the first model of navigation, survivors are referred to the citywide survivorship navigator through other navigators within the GWCI Citywide Patient Navigation Network (CPNN). This network includes 36 patient navigators stationed at 17 health care facilities and support organizations within the District of Columbia. This network helps patients access timely, coordinated, standard-of-care treatment and support services throughout the cancer continuum—from initial point of screening through suspicious finding or a confirmed cancer diagnosis and into survivorship. Navigators include outreach navigators, screening navigators, treatment navigators, and community-based navigators serving specific underserved populations. The navigators receive training on a monthly basis from GWCI. Demographic data, type of barrier encountered, action taken, diagnostic information, and timeliness of access to care (diagnosis date, treatment commencement, completion of treatment, etc.) are captured in a secure online interinstitutional database. Survivorship navigation is evaluated by measurements of the number of individuals receiving survivorship information, securing a care plan, and attending educational sessions. Evaluation is necessarily limited to short-term outputs based on the telephone- and group-based model of navigation being piloted. Because the citywide survivorship navigator is not embedded in all DC care systems, she lacks direct access to survivors' medical records. However, the survivorship navigator can query each patient as to his or her level and frequency of service utilization.
Here are some practical examples of survivorship navigation in action, illustrating the activities and outcomes in Table 1. In one case, the survivorship navigator received a referral from another navigator in the Citywide Patient Navigation Network. The survivor voiced financial concerns due to employment difficulties she faced, in part, as a result of her treatment. Without financial resources and health insurance, it was difficult for her to access appropriate follow-up care. The survivor expressed an interest in pursuing a career in the health field. The navigator researched health care training programs for her and found a free program through a community college that provides training to be a medical assistant. The navigator also provided the survivor with general survivorship information from the National Cancer Institute and LIVESTRONG, as well as additional information on job-placement services. Upon follow-up, the navigator discovered that the survivor had applied to the medical assistant program. In this scenario, the navigator was able to assess social, financial, and practical barriers utilizing a customized barriers checklist identifying potential survivorship concerns. This example illustrates how the navigator identified a treatment-related vocational limitation and creatively empowered the survivor to take action to improve her quality of life through job placement and training.
In another example, the navigator assisted a survivor concerned about the frequency of her follow-up with her oncologist as well as late effects of her cancer treatment, including fibrosis in the area of radiation, anxiety, and fatigue. The navigator coached the survivor on communication strategies to discuss her concerns with her oncologist, shared information on late and long-term effects specific to the survivor, and referred the survivor to a free counseling program that is part of The George Washington University's Survivorship Center. In this case, the navigator assisted the survivor with access to appropriate clinical care, awareness of late and long-term effects, and access to supportive care. The navigator also provided information to the survivor on how physical activity could help mitigate her fatigue and discussed strategies to improve her fitness, nutrition, and overall well-being.
In the clinic-based model of navigation, the survivorship navigator educates patients about the importance of age-appropriate care, assists with medical record retrieval, assesses and addresses barriers to QOL (emotional, financial, vocational, practical), and tracks survivor adherence to their care plan. This navigation model is evaluated using a tracking log that indicates whether survivors have a medical home (Y/N), whether they received a survivorship care plan (Y/N), and whether they scheduled visits with subspecialists as recommended (Y/N). Navigation is also evaluated in part through a customized patient satisfaction instrument that assesses the overall survivorship program, including satisfaction with the navigator in preparing the patient for the clinic appointment, satisfaction with the survivorship clinic overall, and satisfaction with postclinic specialty care. Pre/post surveys are conducted at initial intake and at 12-month follow-up to assess changes to survivor knowledge of health history and risks, healthy behaviors, and health care utilization (primary and survivorship specialty care). Healthy behaviors are also assessed by survivor participation in complimentary individualized survivorship nutrition and exercise consultations and educational programs. Finally, an adapted version of the Zebrack Impact of Cancer Scale assesses changes to QOL and self-efficacy.
The impact of the clinic-based navigator can be seen through the following 2 examples. A 44-year-old with a history of a brain tumor entered the clinic having experienced intermittent long-term follow-up care. Known late effects of his treatment included seizures, persistent memory problems, right upper extremity weakness, tremor, and depression. His recommended follow-up included magnetic resonance imaging (MRI) every 2 years; neurological exam annually; evaluation of height, weight, body mass index, and blood pressure annually; and labs annually. Upon intake at the clinic, he had not had an MRI in 10 years. He did not have regular health care and had not filled his prescriptions due to his perceived lack of insurance.
The navigator contacted the survivor's employer and determined that he did have health insurance that did not require pre-authorization or a copay. The navigator requested that his human resources department have an insurance card sent to him, as he had never received one previously. The navigator assisted in scheduling recommended follow-up appointments and followed up regularly by phone to ensure adherence to his plan of care. The survivor successfully completed follow-up appointments, including labs, MRI, neurosurgery consultation, and psycho-oncology counseling. The navigator also met with the survivor to discuss his living situation, long-term planning, and employment. In this case, the navigator provided critical assistance to the survivor in accessing appropriate clinical and supportive follow-up care.
Another survivor who benefited from survivorship navigation is an 18-year-old patient with a history of brain tumor diagnosis at the age of 6 and severe sensorineural hearing loss and cognitive late effects. Her recommended follow-up includes dual-energy x-ray absorptioimetry (DEXA) scan; weight and metabolic screening; ophthalmology exam annually to monitor for cataracts; neurological exam annually to monitor for secondary tumor; and labs annually. Because the clinic did not accept the survivor's form of Medicaid, the navigator worked with her Medicaid case manager to secure a primary care provider for her. The navigator provided the primary care provider with the survivorship care plan compiled by the oncology team and provided him with labs and recommended follow-up for the survivor. The navigator also worked with the primary care provider to get Medicaid authorization for the survivor to be seen for specialty consultation in the survivorship clinic. Finally, the navigator provided the patient with a list of scholarship programs for childhood cancer survivors as she is planning to attend college in the fall.
In these examples, the survivorship navigators were hired specifically as patient navigators, but they happen also to be trained as a nurse and a social worker, respectively. However, these credentials are not necessary to provide the services described: Any well-trained professional navigator could be equally effective. It is the opinion of the authors that the background and education of the navigator should match the specific goals of the navigation program and the needs of the target population. In these illustrations, the survivorship navigators remove barriers, educate and coach survivors, and assist with practical and financial concerns, freeing up the clinical team to focus on the clinical care of the survivor.
Limitations and Special Considerations
It should be noted that most of the validated tools referenced in Table 1 were created to measure health outcomes at earlier points in the cancer continuum and were not designed with the post-treatment cancer survivor in mind. In addition, most validated scales are available in English and Spanish, but measures in other languages are limited, making assessment of non-English–proficient speakers difficult. Most national studies do not adequately power their surveys to draw meaningful conclusions about minority populations, particularly Asian subgroups, Native Americans, and Pacific Islanders.
This article provides general guidance for programs initiating a survivorship navigation program to evaluate their program using measures that currently exist or that can easily be tracked through basic tracking logs. Additional work remains to be done to establish an efficient tool that incorporates these core measures to specifically evaluate the impact of survivorship navigation and to assess the reliability and validity of such a tool across different populations.
Finally, because the diagnosis of cancer can affect not only the patient but also family and loved ones, a special section of this supplement has been dedicated to discuss this matter generally as well as the role of navigation vis-à-vis the caregiver.
Survivorship navigation is a relatively new addition to the field of patient navigation but an important one. This article has summarized the essential functions of the survivorship navigator and defined core outcomes and measures for navigation in the survivorship period. The barriers to access experienced by patients during active cancer treatment can continue into the post-treatment period, affecting quality follow-up care for survivors. Barriers to appropriate follow-up care can be particularly acute for non-English speakers, immigrants, the uninsured, the underinsured, and other vulnerable populations. Survivorship navigation can significantly improve appropriate health care utilization through education and care coordination, potentially improving health outcomes and quality of life of survivors while reducing cost to the health care system. Survivorship navigators can also educate survivors on how to improve their overall wellness, thereby directly impacting the health of a growing population of survivors in the US and across the world.
This conference and supplement were cosponsored by Pfizer Oncology, LIVESTRONG (Lance Armstrong Foundation), Susan G. Komen for the Cure, the Oncology Nursing Society (ONS), the American College of Surgeons Commission on Cancer, the American Cancer Society, and AstraZeneca.
CONFLICT OF INTEREST DISCLOSURES
The authors made no disclosures.
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