Role of a Nurse Navigator and Care Pathways in an Integrated Prostate Cancer Care Program

Abstract: An Integrated Prostate Cancer Program was developed and implemented at the Palo Alto Medical Foundation for Health Care, Research and Education in 2006. The Prostate Program offers surgery, radiation therapy, medical oncology, chemotherapy and hormonal treatment, clinical trials, and palliative care and pain management as well as a range of supportive care services. Various quality groups and several environmental factors contributed to the creation of the prostate program including a practice provider group of forward-thinking urologists and the practice’s noncompetitive culture. This article provides a practical overview of how the prostate program was created with an emphasis on key elements such as the nurse navigator role and standardized supportive care.

Palo Alto Medical Foundation (PAMF) for Health Care, Research and Education is a large multispecialty group practice located in California’s Silicon Valley. An affiliate of Sutter Health, PAMF employs over 1000 primary and specialty physicians in multiple locations in the San Francisco Bay Area and Silicon Valley, including Palo Alto, Mountain View, Dublin, Fremont, and Santa Cruz. All PAMF physicians—including primary care and specialty physicians—are members of a partnership medical group. 

Each year, PAMF sees approximately 250 new analytic prostate cancer cases. These patients receive treatment at PAMF’s Integrated Prostate Cancer Care Program, created in 2006. The Prostate Program offers surgery, radiation therapy, medical oncology, chemotherapy and hormonal treatment, clinical trials, and palliative care and pain management. Radiation treatment modalities include brachytherapy, intensity modulated radiation therapy, image-guided radiotherapy, and external beam radiation therapy. Supportive care services include:

• Nurse navigator services
• Patient and family education programs
• Psychological and sexual counseling
• Oncology social worker services
• Financial counseling
• Nutrition counseling
• Physical therapy services
• Complementary services, such as acupuncture and healing imagery for cancer patients

Prior to the creation of PAMF’s Integrated Prostate Cancer Care Program in 2006, a urology and radiation oncology cancer conference met regularly for well over a decade. Pathologists brought slides to the conference and any PAMF provider could attend. In the early days, mainly retrospective cases were presented to address issues in quality improvement or to discuss rare and unusual clinical cases. This multidisciplinary format fostered dialogue among providers. Today, most cases are discussed prospectively to best determine the individualized treatment plan of care for each patient. These conferences include urology, radiation oncology, and medical oncology, as well as other pertinent specialists. A patient’s primary care provider can also choose to attend the conference. The urology-oncology tumor board meets formally at least once a month, and ad hoc meetings are arranged as needed.

The driving force behind the creation of an Integrated Prostate Cancer Care Program was PAMF’s patient-focused cancer care (PFCC) committee. This committee included nurse managers and administrators from the various departments that serve cancer patients including medical oncology, radiation oncology, urology, radiology, general and plastic surgery, health education, and the cancer care clinic, nurse navigators, and several cancer survivors who were treated at PAMF. The PFCC committee met regularly for over 8 years, starting in 2004 in our exploratory work for creating PAMF’s integrated cancer care programs, and continuing until 2012 to when our breast and prostate cancer care programs became fully functional. 

PAMF’s Urology-Oncology Working Group also provided direction to the Integrated Prostate Cancer Care Program. This group is a multidisciplinary team of physicians, including urologists, radiation oncologists, medical oncologists, pathologists, radiologists, nurses, and administrators, and a nurse navigator. 

In addition to these two groups, several environmental factors helped foster the creation of the Integrated Prostate Cancer Care Center, such as a practice provider group of forward-thinking urologists and the practice’s noncompetitive culture.

This article will further detail the Prostate Cancer Care Program within PAMF, with specific regard to the nurse navigator role and the importance of structured, standardized, and supportive care.

Integrated Prostate Cancer Care Program

Before establishing the Integrated Prostate Cancer Care Program, a team of PAMF physicians, nurses, and administrators visited the Mayo Clinic in Scottsdale, AZ, the Forsythe Cancer Center in Durham, NC, and the University of California, Los Angeles, to observe existing prostate cancer programs in operation during 2004. Cancer registry data was used to identify the number of patients diagnosed with prostate cancer and our out-migration patterns. An environmental assessment was conducted to identify services offered for prostate care in the community. As a result of this assessment, gaps were found, revealing a need for additional resources in the community. We worked to develop these resources; two examples of these new resources include our Buddy Program, which connects newly-diagnosed patients with prostate cancer survivors, and a prostate cancer support group.

Three factors underlie the success of PAMF’s Integrated Prostate Cancer Program: 

1. Patient feedback 
2. A nurse navigator
3. Communication, including the electronic medical record (EMR)

The Patient’s Perspective

In 2004, PAMF—with the help of its diagnosing physicians—recruited patients and convened several focus groups in an attempt to answer two basic questions: after initial diagnosis: (1) why did some patients stay and (2) why did other patients choose to go elsewhere for treatment? Out-migration numbers were small (fewer than 10 patients), but the practice still wanted to identify areas for potential improvement.

These initial focus groups were limited to breast and prostate cancer patients diagnosed within the previous year. Onsite focus groups were hosted for patients treated at PAMF; in-depth telephone interviews were conducted with patients who opted for treatment elsewhere to help understand why they had decided to leave PAMF for their cancer care. All focus group participants received a small honorarium for their time. 

While the focus groups provided a wealth of information, one fact stood out: patients wanted a coordinated effort from their treating physicians, especially when facing a new cancer diagnosis. Data revealed that patients were open to the option of having an extended meeting involving all of the cancer specialists soon after diagnosis so that they could thoroughly learn about all available treatment options and the pros and cons of each option. This finding seemed to negate an initial concern that such a multidisciplinary clinic might be overwhelming for patients and their families. 

In the end, the decision to develop the Integrated Prostate Cancer Program grew out of the patient focus groups. In other words, it was not a “top-down” decision. Since the development of the Integrated Prostate Cancer Program, PAMF has conducted additional focus groups as one method to measure the program’s impact on patient perception of quality of care.

Creation of Nurse Navigator Role: The “Glue” 

Cancer patient navigation was formally established in the early 1990s, due largely in part to the American Cancer Society’s (ACS) report revealing disparities in care, and Dr Harold Freeman’s pioneering response through the first patient navigation program in Harlem,¹ which led to multiple patient-centered programs across the United Sates. During this same period, the movement for nurse navigation in oncology began. With roots in domains of clinical nurse specialists, case managers, and utilization management nurses, nurse navigators have become an essential core component to all cancer programs.^2,3 

The Patient Navigation Research Program was a joint initiative between the National Cancer Institute and ACS to evaluate the effect of navigation on cancer care, revealing benefit to patients through faster resolution of abnormal screening tests and treatment.⁴ Most early programs focused on breast cancer, while today multiple types of navigation exist, including other disease-specific emphases as in prostate cancer. Literature specific to prostate cancer navigation is rare,⁵ so cancer care programs often build this specific service from the ground up.

Our nurse navigator role was formalized officially back in 2004, and since then we have been using National Comprehensive Cancer Network (NCCN) guidelines to lead our treatment efforts. The program designed an in-house pathway that prompts all of the urologists who perform biopsies to send all patients to the nurse navigator for an initial education session, eventually using the formalized navigator shared decision-making (SDM) intervention. As a defined quality indicator, a program goal was for all newly-diagnosed patients a surgeon and to see a radiation oncologist. Eventually, these processes became components of the prostate cancer program that is utilized today.

Multidisciplinary Care Delivery Flow and Care Pathways

The practice of diagnosis, visiting a nurse navigator, and beginning treatment is how we utilize pathways: a patient navigation pathway. All care is aligned with current NCCN guidelines, including care guidance within the navigation pathway.

When the nurse navigator role was first created, the navigator coordinated everything, from physician consultations to various imaging scans. But then it was ascertained that we could integrate first-line staff more efficiently to assist in patient flow, particularly when beginning to offer our multidisciplinary clinic visits, which can potentially become a logistical nightmare, given all the varying provider schedules and limited shared clinic space. The navigator could then focus more upon direct patient care.

Today, the pathway begins when the urologists disclose the news to their patient that a biopsy is positive for prostate cancer. They explain to the patient that they will soon be seeing the nurse navigator and radiation oncology; this is presented as the required next step, as opposed to an option. Imaging appointments, if needed, are also arranged at this time. All of these appointments are handled by front-line staff who have received specific training regarding our expected prostate cancer care flow and pathways.

Upon disclosure of initial prostate cancer diagnosis, two options for meeting the rest of the care team are offered in the care pathway: (1) patients can meet with the nurse navigator, a urologist that offers robotic-assisted laparoscopic prostatectomy, and a radiation oncologist, at individual separate appointments; or (2) they can utilize our Prostate Cancer Multidisciplinary Clinic, available once weekly, that includes visits with all providers listed above, taking place over a 2 to 3 hour span on a Friday morning. Patients and their families are seen in the Cancer Care Clinic, and the nurse navigator and specialty physicians come see them sequentially in one exam room.

At the initial visit in both options, the navigator discusses the positive biopsy with the patient in detail, followed by a review of the treatment options available to him with the possible side effects and how to manage them. The nurse navigator’s responsibility is to lead them through the SDM process. We have also begun to use more genomic studies to inform decisions, particularly if they have the option of active surveillance vs surgery or radiation. 

Various genomic studies can further analyze the tissue obtained on prostate biopsy, examining specific genes that may help indicate if the prostate cancer cells are more or less aggressive than expected given the clinical stage. In the current NCCN Guideline for Prostate Cancer (2018), the expert panel believes that men with low or favorable intermediate risk disease may consider using this type of molecular tissue testing in further risk stratification, which may help men with prostate cancer make treatment decisions.⁶ Germline BRCA-based testing may also be considered when these men have a significant family history of cancers, including breast, ovarian, pancreatic, or aggressive prostate cancer, so the nurse navigator may assist with referral to a genetics professional for counseling and possible testing. In essence, our clinical pathways are better defined as care pathways that consider NCCN guidelines and genomic data.

Evolution of the Nurse Navigator Role: From Novice to Expert

In nursing, Benner’s seminal work, From Novice to Expert, provides guidance and inspiration to many, insightfully describing how nurses develop their practice over time.⁷ Similarly, in the development of the role as an oncology nurse navigator, there seems to be a progression which is most evident through the questions that physicians have asked about the role. The focus of the nurse navigator role moved from logistics, to education, then counseling, and finally into care transitions.

Logistics. Early on, physicians asked, “What is a navigator? How will this help me?” At this stage, many of the navigator tasks focused upon logistics, helping newly-diagnosed prostate cancer patients make consultation appointments and coordinate treatment schedules. Much time was spent trying to recruit patients and urging physicians to refer patients to the navigator.

Education. The nurse navigator program grew, and then the physicians asked, “What is the navigator teaching my patients? How do I refer?” As the role developed, more time was spent with patients during individualized education sessions, teaching them about their new diagnosis and answering questions about the treatments to follow. Less time was spent on recruiting patients, and seeing the navigator became one of the expected appointments for patients receiving a new diagnosis.

Counseling. As the nurse navigator became integral to cancer care at our facility, the physicians often asked, “My patient has a new diagnosis…where is the navigator?!” At this point, all newly-diagnosed prostate cancer patients are routinely sent by their urologist to see the nurse navigator. A crash course in prostate cancer biology is soon followed by in-depth discussions of the options in cancer treatment, as well as what to expect with each proposed care path. SDM tools are also used in an effort to help patients choose from several options, which may all seem to be equally effective at a glance.

Care Transitions. “My patient is done with treatment…where is the navigator?!” With more attention to quality-of-life issues after treatment and into survivorship, nurse navigators soon may be routinely asked to assist with these transitions of care. Having already developed a relationship with the patient and family from the time of diagnosis through treatment, the nurse navigator may already be the best resource to help the transition of care into survivorship, working in collaboration with oncology specialists and primary care providers to help address concerns of patients even many years after treatment has been completed. Similarly, nurse navigators may need to assist with transitions of care for advanced cancer, refocusing goals of care from disease-control directed to symptom-management directed care over time. This is a very stressful process for patients and one where the support of a knowledgeable and empathetic navigator can be particularly helpful. The nurse navigator role evolves from a mere amenity to a crucial component of cancer care, continuously assisting patients, families, and health care providers across the care continuum.

Software Support for Care Pathway 

PAMF was one of the early adopters of the EMR in 2000. It was quite a transition from paper and film to a fully functional system that allowed health care providers to communicate with patients electronically. This was done in a secure fashion through our program, My Health Online (MHO), which is integrated into the EMR. Doctors expressed satisfaction with the ability to refer patients electronically from department to department. Doing so keeps patients from getting lost in the system, and it is integrated with managed care so if any authorizations are needed for imaging or genetic/genomic testing, it can be handled electronically for the most part or you can enable sharing of the results in-house. Some of the physicians and nurse navigators work at several satellite locations but still have access to this information, including secure, confidential access to the EMR and patient messaging through personal electronic devices.

In the EMR, the patient navigator also has the ability to electronically refer patients to radiation oncology. The referral is signed electronically by the urologist, saving everyone involved a multitude of phone calls and faxes, etc. What was once a very new and exciting transition is now a tool used regularly to this day.

After speaking with other navigators across the country, it seems that other facilities have different software programs that are helpful to the navigator. Acquiring these tools would make it easier to look across charts, as opposed to the rudimentary chart by chart analysis, providing yet another potential method to make our system better.

As for external referrals, medical records that used to be faxed back and forth can now be reviewed through Care Everywhere, a function within our EMR in which medical records from other facilities that are part of the system can be viewed easily.  

Documentation of the nurse navigator visit is facilitated by a template within the EMR; once the navigator note is completed, it is electronically routed to the urologist, radiation oncologist, and primary care provider. The completed SDM worksheet acts as a measure of due diligence for this type of a patient and is an accountability tool between patient and navigator.

Patient Interaction

Patients at PAMF can opt-in to MHO, which allows secure messaging to their care providers, including the nurse navigators. Although the MHO system does not allow file attachments, educational resources and tools can easily be shared with patients through hyperlinks within the messaging itself.

MHO allows patients to message the nurse navigator or their physicians directly through the online portal. Patients in need of assistance can easily reach the staff. If not answered within a couple of days, a reminder is sent to the provider to do so. The system also allows for rerouting of questions that urologists or navigators are unable to answer.

Patient Involvement in Decision-Making 

At PAMF, all patients are encouraged to be fully informed of their decisions. It was found that if they are given all of the materials and information at our disposal soon after initial diagnosis within a structured nurse navigator intervention, patients are more satisfied with their treatment decision regardless of the outcomes, even 5 years post-treatment.

This sentiment may not come from only seeing our providers; it could also come from receiving second opinions externally, for those patients that pursue such visits. The navigator can facilitate second opinions by request, and patients are generally more satisfied down the line if they are not burdened with the process of scheduling these appointments on their own. Positive feedback was obtained from streamlining this process and making sure people do not fall through the cracks. More importantly, it is in line with the overall mission of having the best-informed prostate cancer patient.

Patient involvement has improved vastly between the inception of the program and today. Patients are often actively gathering information about their diagnoses and symptoms, as well as data on treatment regimens. The prostate cancer program is very robust because this type of patient engagement is encouraged and cultivated. The goal is for patients to have ownership over their decisions; the days of relying solely on the doctor’s advice are long gone. In this day and age, a treatment decision is made mostly by the patients and their families and centered around the idea of “what’s best for me.” The right choice could be active surveillance, surgery, or radiation depending on the patient. 

Of course, there is the customary case of a patient having too much information, which is potentially problematic. Some patients just want answers immediately. They may ask, “How many people have urinary symptoms or erectile symptoms?” While it would be convenient to have that type of information available at the click of a button, this simply is not possible at the moment. We employ EPIC-16 questionnaires to gather data on how they are handling their urinary and erectile function prior to and periodically after treatment. However, there is no system that compiles all of the data and is easily accessible. There are not many resources that offer outcomes analysis that are easily and succinctly organized for access purposes. Validated tools are used, including the Memorial Sloan Kettering Cancer Center Nomograms, to provide patients with an idea of their progression-free probability and other outcomes and statistical measures. An online portal for quicker access to provider-specific outcomes data at PAMF is needed, even for providers, as well as patients. Providers are often curious about treatment outcomes, specific to their patients, but our current system does not allow for point-of-care access to such data. Patients often ask for this outcomes data as well, but specific reports are not readily available (despite living in an era where online reviews and star ratings have become the norm for consumers in general).

When we were conducting a National Institutes of Health research study (2009-2012), a dedicated team of researchers collected and closely tracked outcomes data. Now that the research study is closed, we do not have the time nor the bandwidth to take over that responsibility at the same level. We have some reliable data for quality of life, but it only spans a few years and is not being updated frequently at the moment. Again, an advanced online portal would be ideal, to best collect and analyze outcomes data, which ultimately can help providers and patients facing prostate cancer. 

Moving Toward Value-Based Care

Not many changes have come about in our day-to-day operations as a result of the transition toward value-based care. When it comes to decisions of active surveillance, surgery, and radiation, insurance is not a factor in treatment-decision making among standard treatment modalities, as supported by NCCN guidelines. Differences in overall cost, surgery vs radiation vs active surveillance, are not often a concern to the patient, but sometimes out-of-pocket cost can be an issue. Navigators can help address these questions by working with the staff in finance and reimbursement, in an effort to gather information that will clearly outline the patients’ financial responsibilities with respect to treatment options. 

Cost of care may be a significant factor in some prostate cancer treatment decisions, but only with the experimental therapies. A majority of patients at PAMF happen to be well-insured and cost is not a large concern. It is also worth noting that our prostate cancer program deals more commonly with localized prostate cancer rather than advanced/metastatic disease, the latter of which is associated with far more chemotherapies and treatment options that can further complicate the financial toxicity for patients.

Patients are beginning to ask for emerging technologies (eg, focal therapy, ultrasound, and CyberKnife radiosurgery, high-intensity focused ultrasound). Currently, these technologies are not used on a routine basis, thus it is a bit more difficult to obtain coverage because the belief is that conventional surgery and radiation are still very effective.

Conclusion

Through PAMF’s experience in developing the Integrated Prostate Cancer Care program at PAMF, key factors were identified that contributed to the long-term success, including assessing and acting upon our patient perspectives, streamlining communication with the help of a robust EMR, and the crucial role of the nurse navigator. Thanks in part to the NCCN guidelines, prostate cancer care does have some standardization with respect to clinical pathways, yet every site is significantly different and new ways of streamlining the care process are continuing to emerge; for this reason, the role of the navigator is very valuable. As we continue to learn more about the value of downstream revenue, the value of nurse navigators will be more defined. Tools and data analytics to demonstrate the value of nurse navigational programs will be critical to the growth of this position nationwide.

References

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