Patient navigators support the care of cancer patients in many ways, with care coordination being the core task that no other person on the healthcare team oversees. This is particularly true with patients who receive concurrent treatment, including individuals diagnosed with a malignant brain tumor. Concurrent treatment requires the patient to navigate the unique processes of 2 discrete clinics, along with adhering to multiple protocols and managing the potential side effects of 2 types of cancer treatment. Because staff working in each modality are typically focused on patient care and processes within their specific clinic, patients may find that no one is serving as quarterback, particularly related to patient flow and coordination across treatment types. Nonclinical navigators are qualified to serve this role, not just to support patients and caregivers, but also for the multidisciplinary clinical team.
A brain tumor is often diagnosed after a patient goes to an emergency department with an unabated headache or a seizure. Other symptoms can include personality changes, difficulty speaking, vision changes, difficulty walking, problems with coordination, and vertigo, among other symptoms. A diagnostic MRI is completed, and the patient is referred directly to a neurosurgeon, who performs either a biopsy or total excision, depending on the location and extent of the tumor. This article will focus on glioblastoma (WHO grade IV), which along with anaplastic astrocytoma (grade III, which typically recur or progress to grade IV) comprise 38% of primary brain tumors. Once the pathology confirms the brain tumor diagnosis, the surgeon refers the patient to a neuro or medical oncologist and radiation oncologist for concurrent chemoradiation, the standard of care established by Roger Stupp, MD, in his landmark trial in 2005. The Stupp protocol includes 6 weeks of daily radiation with concurrent oral temozolomide, followed by a 4-week break and a subsequent MRI and follow-up visit with the oncologist. The next phase of treatment is 6 months of a higher dose of temozolomide for 5 days followed by 23 days without treatment. Other medications commonly prescribed are antiepileptics, antiemetics, preventive antibiotics, and steroids.
Prognosis for patients with a brain tumor depends on tumor type, location, patient age, patient’s general health, and tumor operability. The average 5-year survival rate for an adult with a brain tumor is 6.8%. Regardless of the type of malignant brain tumor, the diagnosis is life limiting. This reality impacts the conversation between providers and patients and their caregivers regarding patient goals and preferences. Providers have the challenge of finding the balance between setting realistic expectations about the clinical outcome and hope for the best quality of life, while the patients and their loved ones are grappling with the stark facts of having a life-threatening illness. And we see that patients’ and their caregivers’ perceptions and experiences of the diagnosis shift over time, particularly as a patient’s clinical status declines. Treatment decision- making and adherence to the plan occur in this fluid personal process. Patients are better supported if each member of the neuro team and their caregivers are in tune with these changes over time and adapt to the patient’s fluctuating needs, abilities, and preferences.
Role of Navigator
The nonclinical navigator plays a pivotal role on the neuro team early in the patient diagnosis and through to end of life. Once a patient is referred to the neuro- oncologist or radiation oncologist, the navigator can step in to coordinate care. The navigator can use the medical record system to generate a “new patient appointments” report for the neuro-oncologist and the radiation oncologist to identify new patients and prepare for them. The navigator can determine if a coordinated consult with the other clinic provider (medical oncologist or radiation oncologist) should be established as well. This will ensure coordinated appointments that are more convenient for the patient and shorten time from consult to treatment time.
Newly Diagnosed Patients
New patient consults with the neuro-oncologist or the radiation oncologist is a good time for the navigator to meet the patient to introduce the navigator role, provide basic education about the standard-of-care treatment path, the team members, and patient resources. This is an opportune time for the navigator to learn about a patient’s support system and symptoms and determine if an early referral to social work or palliative care is advisable. If the patient has a primary caregiver, it is helpful to determine if the patient verifies that medical information and other communication with the caregiver is permissible. Many patients with brain tumors have trouble with aphasia, cognitive functioning, and memory, so the caregiver can become a valuable team member who can offer accurate updates and insights on how the patient is doing. This first visit should also be used to assess patient understanding of the treatment plan, identify any barriers to care (transportation, information, financial, etc), and, importantly, establish trust. Once the navigator demonstrates that they (she/he) will be responsive and reliable, the patient and caregiver are more likely to turn to the navigator to address barriers and share pertinent information about their status and experience in the cancer center. With this information, the navigator can be a bridge between the patient and providers and other team members by sharing relevant and important feedback. In the end, this improves communication between the patient and the team and among the team members.
Tracking patients is critical for treatment adherence, managing medical issues, and coordinating care among the neuro team members. An Excel spreadsheet on a shared drive available to the navigator, nurse practitioner, or others can be easy to access, adapt to clinic needs, document metrics, and serve as a central historical document.
The navigator can add each new patient to the spreadsheet, which synthesizes critical information about neuro clinic patients: name, date of birth, medical record number, patient and caregiver contact information, diagnosis, neurosurgical history, upcoming provider appointments, lab and imaging appointments, and more. The patients can be organized in categories such as new consults, concurrent treatment, adjuvant therapy, clinical trials, other treatments, and follow-up care. The navigator can maintain parts of the spreadsheet, which can be used during neuro rounds to facilitate discussion about patient scheduling needs, side effects, orders needed, test results, psychosocial concerns, and palliative care needs.
Fields on the spreadsheet can include various navigation measures and points along the patient path that can serve as reminders of tasks that the navigator needs to complete. For instance, the standard-of-care schedule, including weekly labs, follow-up MRI, and provider visits, can be completed with dates scheduled or marked as “needed.” Information about designated specialty pharmacy, anticipated refill dates, support services needed, referrals to specialists, and other data can also be included.
Further, if the document is stored on a shared drive, the neuro clinic nurse practitioner can document and track medical information such as test results, upcoming treatment cycles, and new medications prescribed. The spreadsheet is a tool to support the whole team in managing the timely care of the patients, and it is a good example of team members working to the top of their licensure and in collaboration.
As with care teams for patients with other cancer types, the neuro team is multidisciplinary, with each team member playing a defined role. The navigator plays a central position and keeps track of overall issues and processes for each patient as they relate to medical, psychosocial, palliative, spiritual, and logistical domains. The navigator has an ongoing and dynamic relationship with the physician, advanced practice providers, social worker, palliative care, and other specialists to facilitate coordination and communication among the team. Although every team member has a crucial part in the patient’s care, it is the navigator who assesses, educates, communicates, and addresses the barriers and concerns that arise throughout a patient’s care. The navigator ensures that orders are written, referrals are made, appointments are set, medications are delivered, and that the patient and the team are informed as needed. Effective communication among the team facilitates staff working collaboratively and efficiently, resulting in a better experience for the patient and caregiver.
Navigator as Patient Advocate
The navigator is introduced to the patient early in care and follows the patient, identifying patient preferences and barriers. Because the navigator presents their role as a point person or quarterback on the team, patients often are willing to share information and experiences not articulated to others with the navigator. These issues are often relevant to adherence, psychosocial or side effect management needs, challenges with the healthcare system, and patient satisfaction. A brain tumor diagnosis is typically life limiting and the treatment demanding. The navigator can ease some of the burden faced by the patient and caregiver by being responsive to preferences and needs related to education, problem-solving, and communication styles. For instance, if a patient wants to have limited information about their prognosis and the caregiver wants to hear or know realistic expectations, the navigator can ask the provider to keep this in mind when discussing care, even setting up a designated time for the provider to speak privately with the caregiver. A patient may prefer visual, written, or oral educational information, and the navigator can share this preference to the team and provide appropriate materials to the patient. Advocacy groups dedicated to brain tumors have many resources available to the navigator and patient. The navigator can even participate in the development of resources that can fulfill a need in educational materials.
Navigation Program Development
For navigators new to working in the neuro team, a useful strategy for establishing role delineation and processes is to create a process map describing the patient path within the clinic. Diagramming the steps a patient follows to establish care, from contacting the schedulers, reviewing the time from contact to appointment, any diagnostics needed, treatment, through to posttreatment or end of life, is useful in identifying touchpoints for the navigator and other team members. Clinic staff can easily get so hyper-focused on the particular tasks of their jobs that they may not be tuned into the patient experience along the care continuum. As a navigator builds or evaluates the existing program, it is useful to think about what steps a patient must take to initiate, receive, and manage their care. The navigator can get input from others on the team, as well as from patients and caregivers, to view a broader perspective on the whole clinic system and patient pathway.
In developing a navigation program, the navigator can consider a number of questions to get started. Who are the other members on the team initially involved with the patient: new patient coordinators, schedulers, providers (physicians, advanced practice providers, phlebotomists, imaging staff)? When is the best time for the navigator to introduce themselves to the patient? What are some key intake questions to ask the patient to assess learning style, support network, other medical issues, greatest concern, and understanding about their diagnosis, assessment for needed referrals to social work, palliative care, rehabilitation, or other experts? Do patients know who is on the neuro team and how to contact them?
The patient navigator can develop support materials to distribute to patients when they are new to the clinic. Because there are so many people on the team, it is helpful to have a patient guide that lists all the staff on the neuro team and their role and contact information, along with hospital departments, advocacy groups, and specialty clinics in the area. The navigator can also create a document that describes the team members’ roles, so that questions and problems can be resolved more quickly. This list can include physicians, nurse practitioners, navigators, triage nurses, radiation oncology nurses, social workers, palliative care practitioners, rehabilitation, support groups, and other integrative health programs.
Care Coordination Evaluation
For navigators interested in quality improvement, surveys can be employed to evaluate how well patients and caregivers are supported as the treatment plan unfolds. The navigator should partner with other members on the team to identify goals for the quality improvement project, because each staff member will have a valuable point of view and have an investment in the outcome and potential resulting changes to the clinic operations.
Our team found a validated evaluation tool that we administered with patients and caregivers in our neuro clinic. We decided to approach patients halfway into their initial 6-week treatment cycle, in time to identify issues that we could address while they were still in active treatment. From the surveys, we learned that patients had remaining questions about obtaining their medications from the specialty pharmacy, when to take the oral chemotherapies and the other supportive medications, and about conflicting information from the medical oncology and radiation oncology teams. To address these issues, the navigator worked with the nurse practitioner to develop a process to provide more effective patient education. The nurse practitioner established individual chemotherapy education sessions to teach patients about the medications and potential side effects, side effect management, and to provide a written calendar about the timing of taking medications, and to answer any questions. The navigator used the survey feedback to enhance the information and resources she presented to patients at new consults.
The navigator met MP, a 72-year-old woman newly diagnosed with diffuse astrocytoma who had surgery 4 weeks prior. The patient’s sister, who lived locally, attended the initial appointment with the navigator. This meeting was scheduled immediately following the initial consult with the radiation oncologist. During the visit, the navigator learned that although the patient was recovering from surgery with no major difficulties, she was feeling overwhelmed with the diagnosis and was missing her husband, who had died 7 years prior.
Because the patient lived alone, she agreed that the neuro team could include the patient’s sister on all e-mail communications as a support. The navigator let the patient know that the sister’s contact information would be shared with the team (on the spreadsheet). The patient requested a referral to a speech pathologist, because she was having some trouble speaking. The navigator assured the patient that she would ask the provider for the required order. Once the order was in the system, the navigator followed up with the patient and provided guidance on how to schedule the speech pathologist appointment in conjunction with her upcoming radiation treatments. The navigator next met the patient at her 3-week treatment mark to administer the care coordination survey. The sister attended this appointment as well. During the appointment, the navigator learned that the patient was anxious to make some decisions about distributing the family heirlooms currently in her home. The navigator and the patient discussed the barriers to working on this project and some possible ways to overcome those. This personal goal persisted for over a year, and the navigator and patient discussed strategies a couple more times until the patient acted on a solution.
At one point, the navigator identified that the patient was having more trouble cognitively, and the sister expressed some challenges with transporting the patient to her physician about 45 minutes away. The navigator let the patient and sister know that she could transition her care to the local neuro-oncologist and reduce the burden of getting to appointments. Over the next couple of months, the navigator offered to facilitate making appointments with the new provider, and eventually the patient expressed interest in following up on this option, much to the caregiver’s appreciation.
About a year and a half after diagnosis, the patient started to have vision issues and discussed this with the neuro-oncologist, who entered an order to see a neuroophthalmologist and notified the navigator. The navigator facilitated getting a quick appointment with a local specialist and ensured that the patient was aware.
Over time, as issues arose for the patient, she or her sister would reach out to the navigator and request assistance and express gratitude for quick response and resolution. Whether the needs were simple or required more complex coordination, the navigator consistently offered help. The navigator also ensured adherence by coordinating specialty medication delivery, directing side effect issues to the nurse practitioner, and facilitated appointments with specialists that resulted in downstream revenue. Patient and caregiver satisfaction was high throughout her cancer treatment.
Nonclinical navigators contribute over a range of areas in the neuro clinic supporting patients, caregivers, and the rest of the professional team. The wide variety of responsibilities of a navigator impacts patient satisfaction, provider satisfaction, treatment adherence, care coordination and guidelines adherence, downstream revenue generation, process improvement, and safety. The navigator interacts with everyone on the team and can find many opportunities for professional development and personal reward in making a difference for people with a dire diagnosis.
Unless otherwise noted, statistics are sourced from Ostrom QT, Cioffi G, Gittlemanthe H, et al. CBTRUS Statistical Facts Report of Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2012-2016. Neurooncology. 2019;21(suppl 5):v1-v100.