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.
Table 1. Navigator Activities and Measures
|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.