- Leveraging GU Navigation in Urology Groups
- Treatment Considerations with Oral Oncolytics
- Workplace Resilience
- The DISCO App – A Patient-Focused Tool to Reduce Financial Toxicity
Leveraging GU Navigation in Urology Groups
Patient navigators Marco Carlos, Director Clinical Care, and Valerie Guzman, Navigation Manager, Urology Austin, discussed their professional introduction to navigation through the large urology practice that employed them. As Mr Carlos stated, prior to joining the navigation team, he had heard of patient navigation, but he believed that it was only used in hospitals, large cancer centers, or academic institutions. He did not yet understand how patient navigation serves patients and improves patient outcomes, nor was he fully aware of how it integrates with clinic workflow and how it also benefits the practice. Ms Guzman shared a similar experience. As they stated, patient navigators are often “home grown,” that is, they are recruited from among a medical practice’s current staff members and encouraged to take on the role of navigator. Typically, they have many years of urological experience and a love of learning, and they apply that knowledge to patient care. Known as self-driven and high-producing employees, they are drawn from among nurses, medical assistants, surgery schedulers, patient service representatives, and others.
Mr Carlos presented a history of some of the signal events in healthcare provision that led to the development of the urology navigation program in which they work. According to this timeline, in 2010, a few urology groups had started to assign coordinators to identify patients for novel prostate cancer treatments that were becoming available in the pre-chemo space. Subsequently, clinics within practices began to emerge, and patient navigator positions started to appear in large group urology practices around 2012. A significant event in the implementation of urology navigation occurred in 2015, with the first Patient Navigation Meeting. In partnership with industry and the Large Urology Group Practice Association (LUGPA) and hosted by UroGPO, these meetings began to provide an introduction to the disease state (prostate cancer) and patient navigation. By 2016 at the LUGPA conference, interest in navigation programs spiked, with a dedicated talk on the agenda.
The majority of urology practitioners are interested in staying on the cutting edge of diagnosis, treatments, disease detection, and standard of care, Ms Guzman said, and they saw the value in navigation programs. Many groups started to group together ideas and strategies from across the UroGPO network, finding different levels of success until zoning in on some best practices. She added that data analytics and the ability to mine data from electronic medical records made it possible to filter patient populations and identify actionable events such as rising prostate-specific antigen levels and metastatic lesions.
The ability to quantify the ways in which navigators contributed provided hard and undeniable proof that patient navigation and data analytics were key to delivering outstanding patient care. Innovations, including tracking patients with No Next Appointment, resulted in the recovery of 1927 patients who then completed various treatments, tests, and follow-up visits. As navigation became the standard, more and more groups started to accept the development of navigation programs in their practices.
Treatment Considerations with Oral Oncolytics
Jerilyn Arneson, PharmD, BCOP, Pharmacy Manager/Oncology Pharmacist, Jefferson Healthcare, Port Townsend, WA, and Nikki Barkett, BSN, RN, OCN, Oral Antineoplastics Nurse Navigator, Banner University of Arizona Cancer Center, offered a 2-pronged session that looked at the use of oral chemotherapy and examined challenges that arise when working with patients who have been prescribed these medicines. Presented by a pharmacist and a nurse navigator, the panelists discussed the problems navigators and patients face, including availability, effectiveness, and cost, for this increasingly used treatment method.
From 2020 to June 2021, the FDA approved 15 oral chemo agents, and 30% of new cancer agents in development are oral treatments. While this presents a wider range of treatment options and offers certain advantages, such as convenience and autonomy for the patient, it also introduces potential complications. Among these is the tendency for manufacturers to narrow the distribution of their specialty medications to certain pharmacies to reduce cost. In addition, pharmacies that lack experience with these medicines may be unfamiliar with proper storage and disposal. Patients may have difficulties with adhering to the medication schedule and communication may suffer, while payer lockouts and a limited distribution model can lead to delays in treatment.
Nonadherence and the limited distribution of drugs may have a negative effect on patient outcomes and are therefore of high concern. Working closely with the specialty pharmacy and anticipating some of the typical problems that occur can reduce their likelihood. In addition, patient education by the pharmacist is a crucial aspect in treating patients with oral oncolytics. Ideally, the protocol for all patients on this type of therapy should include counseling prior to treatment, with a pharmacist follow-up after the first week of therapy. The initial counseling should be repeated every 3 months, and patients should receive a monthly call from a pharmacy tech in which patient adherence and adverse effects are discussed.
Aside from compliance difficulties, these newer treatments can carry a high level of financial toxicity, which in turn can impact patient access and adherence. In the second part of the presentation, Ms Barkett examined the impact of financial toxicity and presented strategies to overcome it. As she explained, financial toxicity refers to the degree of financial strain felt by the patient and their family due to high costs for medical care. It is important for navigators to be aware of the effects of financial toxicity and to look for signs of it in patients. These signs can include depressed mood; markedly diminished interest or pleasure in activities; not being able to stop or control worry; recurrent thoughts of death or suicidal ideation; and significant changes in weight, appetite, sleep, or concentration. These symptoms cause significant distress or impairment in social, occupational, or other important areas of functioning.
Most specialty pharmacies have staff to perform benefits investigations and other forms of patient assistance. Copay assistance, 501c3 Foundation Assistance coinsurance assistance, and free drug/patient assistance programs can be of great help to patients. Navigators should be aware of potential problems and possible solutions as they help remove barriers to care for patients whose treatment includes oral chemotherapy.
Mary Buffington, MSN, RN, OCN, ONN-CG, CLC, Founder and Burnout Coach, Burnout Ward, conducted a session that used questions and responses to gauge participants’ level of workplace-related stress. Ms Buffington cited a “Well-Being” survey that found that 79% of the 1501 participants had experienced work-related stress in the month before the survey. Teachers and healthcare workers were the groups most likely to experience work-related stress and burnout.
According to the World Health Organization, burnout is not a medical condition, but an occupational phenomenon characterized by exhaustion, depersonalization, and decreased personal accomplishment. Ms Buffington enumerated some of the physiological responses to heightened stress. These are similar to the sympathetic nervous system response to threats and include the “fight or flight” response, wherein one stands up to a threat or runs from it. Other typical responses include the sensation of “freezing,” that is, being unable to move, or experiencing a sense of paralysis. It may also be expressed in an attempt to appease, thereby decreasing the perceived risk.
Once triggered, the sympathetic nervous system increases neurotransmitters such as cortisol and epinephrine (adrenaline) and norepinephrine (noradrenaline). Other responses include increased alertness and insomnia, increased heart rate and blood pressure, and gastrointestinal distress. Thus, the result is a very real physical sense of unease. Prolonged or unrelieved chronic stress or burnout can lead to other physical manifestations, including chronic pain and injuries, cardiovascular disease, insulin resistance and type 2 diabetes. Stress and burnout can also lead to mental illness and substance abuse.
It is important, therefore, to ask how to change things for the better. Ms Buffington outlined some steps and presented an exercise through which participants learn to reclaim a “locus of control.” By shifting the narrative, that is, the story we tell ourselves about a situation, we can boost resiliency. Resiliency is a key concept in reducing burnout. Inner resiliency can be enhanced by focusing on the 4 areas through which it is expressed. By meeting our needs for safety and ensuring that physiological and psychological needs are being met, a sense of self-preservation results. Another area to develop is the capacity for self-love. That means nurturing self-esteem, compassion, forgiveness, worthiness, and the feeling of “enoughness.” Self-care is crucial in that it helps us to heal and grow and to be a better worker, family member, or friend. Finally, Ms Buffington discussed the importance of identifying one’s purpose. Recognizing and honoring the “thing that gets you out of the bed in the morning” can forestall burnout and is instrumental in creating a personal model of inner resiliency.
The DISCO App – A Patient-Focused Tool to Reduce Financial Toxicity
As the costs of cancer treatment rise and patients increasingly shoulder the cost burden, many experience the severe economic and psychological consequences known as financial toxicity, said Lauren M. Hamel, PhD, Associate Professor, Wayne State University School of Medicine, Co-Program Leader, Karmanos Cancer Institute’s Population Studies and Disparities Research Program, Detroit, Michigan. In the United States, it is estimated that 30% to 50% of patients with cancer are affected by financial toxicity. Dr Hamel discussed the scope of the financial toxicity problem, what might be done to alleviate it, and the development of a computer app for patients’ use in managing it.
The app, named Discussions of Cost (DISCO), was designed as an intervention at the patient–provider level, where treatment decisions are made, and healthcare is transacted. Dr Hamel also discussed the study that was conducted to test the app’s feasibility, acceptability, and effectiveness in an oncology clinic setting and reported on the findings.
Patients with cancer are 2.6 times as likely to file for bankruptcy as people without cancer, and some research shows that patients are responsible for approximately $16,000 in out-of-pocket direct and indirect treatment expenses each year. In addition to expense of treatment, other costs, such as loss of productivity and income, average $8236 annually. As a result, many patients and survivors report psychological distress at significant or catastrophic levels. This can also have other consequences, as growing evidence suggests that patients delay or forgo treatment due to costs.
Patients and providers both often express a willingness to talk about financial concerns but need help in establishing the appropriate context in which to have the conversations that would address many of the financial issues. Dr Hamel noted that her own observational research of video-recorded cancer treatment discussions showed that fewer than half of patient–oncologist interactions included any mention of cost. Not surprisingly, physician engagement on treatment costs has been identified as an unmet patient need. Because patients often are unaware of the full cost of treatment, and unfamiliar with available financial resources and assistance, they are often unprepared when confronted with the out-of-pocket expenses. Raising patient awareness, at an early point in the cancer journey, can help to alleviate some of the toxicity that results. Patient–oncologist treatment cost discussions could help reduce financial toxicity by offering patients an opportunity to voice their concerns and improve patient understanding. Cost discussions could also allow providers to talk about cost, help them connect patients to resources, inform treatment decision and plans, and identify patients who may need assistance.
Following the ASCO and NCCN models to facilitate cost discussions in patient–oncologist treatment and cost discussions, the DISCO app employs Question Prompt Lists (QPLs) to facilitate the discussion. Using patient responses to the QPLs, demographic information, and videotaped interviews, patients were able to express concerns about costs, insurance, loss of work income, and other issues, while providers could identify patient needs and help to address them. The subsequent study found that the DISCO app prompts both patients and physicians to discuss treatment costs, and is feasible, acceptable, and effective at improving short-term outcomes.