Prostate Cancer Navigators: Guiding Patients Along a Journey With Many Turns - Oncology Nurse Advisor
Sponsored Content by the Janssen Pharmaceutical Companies of Johnson & Johnson
Introduction
Patients with prostate cancer and their families must process complex information and work with their healthcare providers to make significant decisions along their journey.1 Navigators play a key role in helping patients manage the challenges of the prostate cancer care treatment continuum, which can at times be overwhelming or frightening.2 Patients come to rely on these professionals as their translators, educators, and advocates.
As a step toward defining best practices for prostate cancer navigators, Janssen Biotech, Inc., and the Academy of Oncology Nurse & Patient Navigators (AONN) convened a virtual roundtable of navigators who play key roles in oncology or urology settings across the country. The panelists, moderated by Emily Gentry, BSN, RN, Senior Director of Education and Program Development at AONN, included three major categories of oncology navigators:
- Oncology nurse navigators – clinically trained individual who acts as a central point of contact for patients and coordinates all components involved in cancer care;2
- Patient navigators – professionals who do not have or use clinical training to provide individualized assistance and serve as the primary point of contact for oncology patients, working with other members of the care team to coordinate care;2
- Financial navigators – counselors who work closely with patients to discuss their insurance benefits, out-of-pocket cost obligations, and, for patients in need, the resources available to assist them in defraying their out-of-pocket cost burden.2
For simplicity, this article will describe these professionals collectively as navigators, except where the category is relevant. In distinct but overlapping ways, they all serve a common purpose of helping patients and families overcome barriers and providing them with timely access to quality medical and psychosocial care from diagnosis through all phases of their cancer experience.2
“As the treatment of prostate cancer continues to evolve and with the advancements made in recent years, this is a great time to gather and highlight the perspectives of navigators and identify opportunities to improve patient experience and outcomes,” said Gentry. Accordingly, roundtable participants discussed the navigator’s unique role within multidisciplinary prostate cancer care teams, best practices for supporting prostate care patients and their families, and solutions for helping patients start and adhere to medical treatment.
“I think my contribution is being an inside man,” noted panelist Marco Carlos, OPN-CG, at a urology practice based in Austin, TX. “They’re met with all this bad news and meeting so many doctors. I let them know they can turn to me for any help, whether to reach out to the doctors or just to check in with them. It’s nice to have someone in house who’s helping them through the process.”
Navigators can prove particularly valuable to patients contending with prostate cancer and some of the unique difficulties it poses. For instance, in localized disease, navigators can help patients weigh surgical and radiological options.3 In advanced disease, the goal is to relieve patients’ symptoms and help extend survival.1 Navigators can support this as part of the patient care team.
Multidisciplinary Collaboration
Navigators play a critical role and can add value to multidisciplinary prostate cancer care in many ways.2 At some oncology centers, the oncology nurse navigator directly oversees activities of various members of the multidisciplinary team. “In my role as oncology nurse navigator and nurse manager, I’m also the facilitator for the prostate multidisciplinary clinic,” says Eula Keen-Woods, MHSM, RNC, OCN, based in Bethesda, MD. “I coordinate from beginning to end, often including scheduling.”
Prostate cancer nurse navigator Frank dela Rama, RN, MS, AOCNS, AGN-BC, based in Palo Alto, CA, performs similar functions as part of a dedicated prostate cancer care team in an outpatient urology practice. “When any prostate cancer biopsy is positive,” he notes, “the urologist by default refers the patient to me, along with other members of the team, including radiation and medical oncology. So, when the patient’s diagnosed, I’ll reach out to them by electronic medical record or phone or video visits. And so, we can connect to go over all the options.”
On occasion, the navigator may provide professional as well as patient education in a multidisciplinary setting. Carlos works in a prostate cancer clinic focusing on patients with advanced disease, within a large urology practice. He notes, “To be an educational resource for the practice as well as patients is where the navigator can really play a key role.”
Education Beyond Information
A wide array of educational materials on prostate cancer and its treatments have been produced for the benefit of patients and their families. These are valuable resources, but the navigator’s role as educator goes deeper than just imparting information. Navigators on the panel expressed that education starts with establishing sustained individual connections with patients.
That individual connection can help the navigator ensure that patients hear, understand, and have access to the information they need to make an informed treatment decision with their physician. “Typically, the doctor will give a clear presentation and answer all the questions, but the patient and family are still in shock, especially if the diagnosis is metastatic,” Keen-Woods said. “So, I contact them a day or two later. A lot of times, they say, ‘Well, I heard it, but then I didn’t hear it.’”
Panelists pointed to several useful sources of educational materials, including authoritative consumer-level books on prostate cancer, materials developed by advocacy groups and other organizations. Some of these materials provide excellent explanations of how prostate cancer and its various treatments work.
These materials have the greatest impact when used as discussion tools rather than passive reading assignments, noted nurse navigator Sylvia Waters, RN, based in Knoxville, TN. Referring to one of her preferred prostate books, she said, “I’ll typically mark pages and then have the patient write down questions. And then they bring the book back, and we discuss.”
Shared Decision-Making
The prostate cancer journey can have many forks in the road, representing decision points with lasting implications for a patient’s health and quality of life. These decisions ultimately fall to the patient and family, in collaboration with their physicians, even if they are still reeling from the initial diagnosis or news that the disease has progressed.4 In supporting a patient in making these decisions, the navigator’s role as educator now extends to helping the patient understand and assess the details of his own disease.
For newly diagnosed patients, there is a lot of information about treatment options the patient needs to understand. “We [at my practice] have a decision-making worksheet that takes them through the pros and cons of each option,” dela Rama said. “My role as navigator is to help them arrive at the decision. Sometimes it takes hours, sometimes weeks.”
In the process, the patient may need to revisit clinical information he’s already seen but in the new light of having to act on it. “We’ll go over their pathology,” dela Rama said, “and I’ll try to help them figure out where they fit in the treatment guidelines and how that may influence their options and potential side effects.” To gauge a patient’s understanding of these options, dela Rama added, it is a good practice to have the patient repeat in his own words what he’s just heard about the treatment plan.
Partnering with both patient and caregiver is essential at these decision points, panelists explained, and input from caregivers and family members provides an important perspective on how treatment may affect daily life. Spouses also tend to be less reticent about discussing such topics as erectile dysfunction, decreased libido, and urinary incontinence. “A lot of times, I speak with spouses more than I speak with the patients,” Keen-Woods said. “The spouse is kind of like the medical secretary.”
Supporting Adherence to Treatment
Prostate cancer treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health.,1 Treatments can range from surgical or radiation treatment for localized disease, to systemic treatments such as hormone therapy, anti-androgen therapy, chemotherapy, immunotherapies, and targeted therapies like PARP-inhibitors, among others for advanced disease.1
Panelists noted that for surgical or radiation treatment, the navigator can help arrange for and monitor adherence to pre- and postprocedural recommendations. Especially for patients taking oral anti-androgen therapy, panelists noted various resources and strategies they personally have found success with in helping encourage adherence.
Carlos noted the linkage between disease education and adherence. “It’s very interesting when you explain to patients how prostate cancer works in a nutshell – why testosterone is so important, why we target it, how we first figured this out back in the 1940s,” he said. “I think it’s key for patients to understand this. I think it helps with compliance.”
“I give the patient a call four or five days after initiating a medication, to see how it’s going,” said Keen-Woods. “From the start, I remind them how important it is to take the medication as prescribed without skipping. That’s when the spouses come in handy. Especially when we’re trying to deal with symptom management, the spouse is able to report on factors like appetite and fatigue.”
“We have good oral adherence thanks to the team approach,” noted Waters. “We have a lot of contact points with patients, especially when they start off.” Her facility’s multidisciplinary care team includes in-house pharmacy, which simplifies medication monitoring and provides a powerful check on adherence. “Every month when you call about a refill,” she noted, “if they’re not refilling, you know there’s an issue.”
Dan Sherman, MA, LPC, and a financial navigator based in Grand Rapids, MI takes the refill issue one step further by running a financial assessment at his facility for any patient who has not refilled his oral oncolytic prescription. That could uncover issues standing in the way of adherence. “If a nurse navigator or social worker contacts me and says, ‘Hey, this patient is canceling all his new appointments, he’s refusing to come in,’ I want to do a financial assessment and really figure out, is that occurring because of financial reasons, and is there a fix for this?”
Waters also described how testing prostate-specific antigen (PSA) levels can serve as a powerful motivator for staying on prescribed treatment. “We do a PSA at four weeks and see them in the office the following week,” she said. “And when they see the PSA at that appointment, how it’s going down, then you really don’t have to fuss with them much more about adherence. They’re pretty excited about that number.”
But often, Waters says, it’s the little things that can make a big difference to adherence. “We have a lot of patients who drive hours to get to us. I have had to help a patient get a new car battery, because his car wouldn’t start to get him to appointments. They’re really going to try hard if they know you care about those things. Believe it or not, they care about how we care about them.”
Financial Forethought
Oncology financial navigators apply their special expertise to help patients and their families overcome barriers to affordable quality cancer care.1 Like other navigators, they work intensively with individual patients to find ways to guide them through the complexities of the health care system.
Panelists stressed that patient education is central to the work of financial navigators because patients need to understand the insurance they have before they can evaluate potential recommendations.
Sherman described two main stages to financial navigation. “First, we look at the patient’s insurance to see if we can get them better coverage,” he said. “Depending on whether and how well we succeed in that, the next step is to enroll in external assistance programs.”
Although not clinicians themselves, oncology financial navigators need to be conversant in the standards of care for each type of cancer they expect to encounter, as well as capable of discussing medical details of current cases in depth. This enables a more proactive perspective on the clinical and financial trajectories those cases are likely to follow. In this way, Sherman noted, “we can predict financial toxicity before the patient even has it.”
Two common features of prostate cancer navigation, from the financial navigator’s perspective, is that most diagnosed patients are Medicare-eligible or nearly so and that progression to systemic treatment changes everything. “When the disease becomes metastatic and the patient is seeing medical oncology,” Sherman said, “then my role as the financial navigator becomes a lot more aggressive.”
Sherman emphasized one essential measure: “At our facility, every single Medicare beneficiary is evaluated to see if they qualify for LIS [the Low-Income Subsidy program]. That’s a highly underutilized program nationally.” When a Medicare patient comes to Sherman’s facility for a medical oncology consult, he will proactively determine the patient’s eligibility for LIS and see that he’s enrolled before he’s left the building. This prevents any risk of the patient walking away from his first prescription because of a large surprise co-pay.
“My goal,” Sherman said, “is to never have my phone ring from a patient complaining about a bill, because I’ve already anticipated and dealt with the issue.”
Conclusion
At many points along the prostate cancer journey, patients and their families may find themselves frightened, bewildered, and overwhelmed. No single health professional addresses those feelings from so many directions as the nurse or patient navigator. They serve as agents of empowerment, for patient and healthcare team alike. “I just get so much joy from seeing how I can help,” says Waters. “One of my favorite things that my doctor champion says to patients is, ‘Don’t send me a Christmas card. Send it to Sylvia, who’s going to be on your speed dial. You’re going to know her well.”
1 Cancer.net. Prostate Cancer: Types of Treatment. Available at https://ift.tt/3c8xHKg. Accessed August 2020.
2 Aonnonline.org. Helpful Definitions. Available at https://ift.tt/2HcdhFb. Accessed August 2020.
3 National Library of Medicine, National Institutes of Health. Localized prostate cancer: Low-risk prostate cancer: Active surveillance or treatment?. Available at https://ift.tt/35J6tsM. Accessed August 2020.
4 Lopes M. The role of the clinical nurse specialist in caring for patients with prostate cancer: a narrative review. Nature Reviews Clinical Oncology. July 2014. Available at https://www.dovepress.com/the-role-of-the-clinical-nurse-specialist-in-caring-for-patients-with–peer-reviewed-fulltext-article-NRR. Accessed August 2020.
Comments
Post a Comment