Earlier this year, oncology navigators from across the country attended the virtual Midyear Conference of the Academy of Oncology Nurse & Patient Navigators. This monograph will review the proceedings from 4 key sessions at the conference covering topics of screening and early detection, vaping, fertility preservation, health literacy, and genetic testing.
Screening and Early Detection
A very common malignancy, lung cancer is the leading cause of cancer mortality in the United States. When it is detected earlier in the course of the disease (stage 0 or 1), treatment is more beneficial for patients, but nationwide, lung cancer screening programs are not reaching nearly enough of the eligible population, according to Anne Conners, MPH, MA, of MaineGeneral Medical Center and Maine Lung Cancer Coalition. Because most lung cancer is asymptomatic for quite some time, this disease is often diagnosed in the late stages, when treatment is much less beneficial.
Smoking is the key risk factor for lung cancer, so reducing tobacco use is the most impactful way to reduce the burden of this disease. Every year, half a million people in the United States die of tobacco-related causes, and for every person who dies, 30 people are suffering from tobacco-related illnesses. However, community health workers (CHWs) can play a critical role in decreasing the burden of lung cancer by implementing lung cancer screening programs and motivating behavior change in these populations.
CHWs are frontline public health workers who are trusted members of the communities they serve. This trusting relationship enables the CHW to serve as a liaison between health/social services and the community, to improve the quality and cultural competence of service delivery, and to facilitate access to services. Through a range of activities, such as outreach, community education, informal counseling, social support, and advocacy, a CHW also builds individual and community capacity by increasing health knowledge and self-sufficiency, not only among patients and members of the community but also among providers, policymakers, and insurance providers.
With the help of CHWs, Ms Conners and colleagues implemented a lung cancer screening program in her home state of Maine, with the goal of establishing the infrastructure to implement and disseminate evidence- based best practices about lung cancer screening, and to facilitate the early referral and treatment of patients with lung cancer throughout the state. Lung cancer disproportionately affects residents of Maine due to the state’s high smoking rate (nearly 20% of residents smoke, well above the US average of approximately 14%), its naturally occurring but mitigable environmental risks (particularly its high rates of radon, a leading cause of lung cancer), and its rurality and geographic barriers to healthcare access.
CHWs were employed as part of the Maine Lung Cancer Coalition to reach the state’s most vulnerable populations. Their community-based outreach strategy was built around 2 aims: increasing knowledge about lung cancer screening (eg, many people are familiar with screening for breast cancer with mammograms but are unaware of screening methods for lung cancer, such as low-dose CT scans), and increasing the number of people referred to the Maine Tobacco Helpline.
In their first year of efforts, the team established a county-wide advisory group to engage with community members and evaluate the current and future states of messaging around smoking and lung cancer in the community. To achieve this, they assessed local environmental health policies and disseminated surveys around knowledge, attitudes, and beliefs about lung cancer. The survey data they collected were then used to develop the messages they incorporated into the implementation phase of the intervention.
In the second and third years, they launched a Primary Care Pilot to increase screening among the eligible at-risk population, and also to encourage individuals who were ineligible for testing to engage in risk-reduction activities such as tobacco cessation or in-home radon testing. Through proactive CHW outreach they were able to reach over 1000 individuals, and more than one-third of those patients engaged in some type of risk-reduction activity after being included in the pilot (radon testing was the most common risk reduction, followed by tobacco cessation). Even though their lung cancer screening criteria were quite narrow, about 8.5% were referred for shared decision-making, and about 7% completed low-dose CT scans.
Approximately 42% of current smokers engaged with the CHWs, compared with about 20% of former smokers. Of 344 smokers who received low-dose CT scans, 215 received tobacco cessation counseling from a CHW, and 151 accepted a referral to the Maine Tobacco Helpline—a rate higher than the standard acceptance rate for referrals to quit lines. These findings demonstrate that a CHW engenders trust, and that behavior change is possible even in this population, according to Ms Conners.
In the final years of the intervention, the team established their Annual Reminder Pilot among patients who were 13 months or more overdue for their annual scan. As part of this pilot, a control group of patients were sent passive letters reminding them to complete their low-dose CT scans, whereas patients in an experimental group received the same letter, along with a call from a CHW. Among the experimental group, almost 90% completed a low-dose CT scan, compared with about 20% of patients who only received the letter, again highlighting the critical role of the CHW.
Vaping: The New Epidemic
Vaping devices (or e-cigarettes) have created a new generation of tobacco addicts among young people in the United States, according to Nancy Sayegh-Rooney, RN, a lung nurse navigator on Staten Island, NY. Although previous generations have smoked heavily, young people today often pride themselves on being an antismoking generation. In response, tobacco companies created a new nicotine alternative for the younger generation: vaping.
Vaping simulates the feeling of smoking with a dopamine release, and that feeling can lead to addiction. Nearly all tobacco use begins in adolescence, and nearly all tobacco products, including e-cigarettes, contain nicotine, the most commonly abused drug and the fastest delivery of a drug to the brain. Importantly, nicotine does not cause lung cancer or lung disease, but it does cause addiction.
Nicotine use among youths can harm the developing brain, impacting learning, memory, and attention, and young people are particularly vulnerable to using tobacco products, as the adolescent mind is still developing and has a natural tendency toward risk-taking. The CDC reports e-cigarette use increased by 68% to 78% among high school students between 2017 and 2018; the JUUL became the most popular e-cigarette in the United States at the end of 2017, with a market share of 72% as of September 2018.
Research shows that the majority of young people in middle school and high school do not know what ingredients are contained in e-cigarettes. These ingredients are not regulated by the FDA, but in addition to nicotine, vaping pods contain glycerol (a colorless, sweet liquid formed as a byproduct in soap manufacturing used as an emollient and laxative, and also for making explosives and antifreeze), propylene glycerol (a byproduct of fossil fuel that is often used to create polyurethane plastic and is also a cancer-causing agent), benzoic acid (a product used in insect repellent), and vitamin E acetate (a thickening agent that burns the lungs, used in vaping products containing THC).
The idea that vaping products can be used as a replacement for cigarettes to quell nicotine addiction is a common misconception. Not only is vaping an ineffective tool to help people quit smoking, but the high levels of nicotine contained in these products only lead to an addiction to vaping. A pack of cigarettes contains about 20 mg of nicotine, whereas a JUUL pod contains between 55 and 60 mg, equivalent to 3 packs of cigarettes.
Because most people do not consider vaping to be smoking, when talking to their patients (particularly adolescents) it is critical that healthcare providers now make the distinction between smoking combustible cigarettes and vaping. Vaping products are all noncombustible and fall under a classification called electronic nicotine delivery systems.
The damage caused by vaping is now well known and documented. EVALI (e-cigarette or vaping product-associated lung injury) is the name given by the CDC to the dangerous new lung disease linked to vaping following the outbreak first documented in Wisconsin in August 2019. Diagnosing EVALI can be challenging because the symptoms of this lung condition are similar to those of other respiratory illnesses, such as pneumonia and even the seasonal flu virus. Symptoms include shortness of breath, cough, chest pain, fever, and chills.
As of January 2020, 2602 cases of EVALI have been reported to the CDC from all 50 states, and 57 of these cases have resulted in death, with all deaths occurring in individuals between the ages of 18 and 40 years. Because this is a new diagnosis, there is currently no way to predict how patients will fare after being released from the hospital following treatment (typically with some combination of corticosteroids, antibiotics, and/or antivirals), and due to the lack of long-term data and the fact that patients have died from EVALI, the prognosis for those affected remains uncertain. However, this type of irreversible lung damage seems to be occurring sooner rather than later in young adults who vape, according to Ms Sayegh-Rooney.
To help combat the vaping epidemic among young people in the United States, the FDA has implemented a Youth Tobacco Prevention Plan focusing on 3 key areas: preventing youth access to tobacco products with methods like price increases and indoor-use restrictions, curbing the direct marketing of tobacco products to youths (ie, flavor restrictions), and finally, educating teens about the dangers of using tobacco products and retailers about their key role in protecting young people from using these products.
Although patients with cancer now have access to many potentially lifesaving treatment options, many of these treatments can cause temporary or permanent infertility. Progress is being made toward patient access to fertility preservation, but despite this, the topic is not being discussed with patients nearly as often as it should be, according to Megan Solinger, MHS, MA, OPN-CG.
Reportedly less than half of oncologists are discussing fertility preservation with their patients, so it is often up to the oncology navigator to educate their patients to make a well-informed decision—albeit in a short amount of time—about what is best for their unique situation. This is particularly important among adolescent and young adult patients between the ages of 15 and 39 years.
Fertility preservation is a time-sensitive and logistic-heavy process, so if a patient wants to pursue it before treatment, starting the process should take precedence over anything else. Cryopreservation (of eggs, sperm, or embryos) is the most common method of fertility preservation. For women, other options include ovarian transposition and monthly ovarian suppression, although the latter is still experimental (and all prepubescent options for both men and women are currently experimental).
Fertility preservation is an acute issue, but it is also a survivorship issue with psychological and social implications. Despite its indisputable impact on patient quality of life, a number of barriers might still be standing in the way of fertility preservation conversations.
First, when it comes to determining who should be initiating these conversations, providers should not assume that someone else has brought up the topic of fertility preservation with a patient, and they should always check to make sure that it is being discussed.
If patients do not know who to go to on their care team, that in itself creates a barrier. To eliminate that barrier, everyone on the medical team should be prepared to discuss fertility preservation, and counseling should always be conducted proactively, before treatment begins.
It is also important to keep in mind that providers tend to have their own personal barriers that stand in the way of broaching this important topic. The issue of fertility preservation can be polarizing, so it is important that providers avoid imparting their own personal views and beliefs onto patients. Navigators should never assume that a patient is not interested in fertility preservation (eg, if the patient already has children), or that the patient or the family does not have the financial means to pursue fertility preservation.
A lack of or limited knowledge of the fertility preservation process should never serve as an excuse for not broaching the topic with a patient, nor should discomfort around the issue. Navigators should educate themselves on the topic and familiarize themselves with the resources that are available to patients, putting aside any personal beliefs.
Even if cancer treatment needs to be initiated immediately, logistical issues and timelines should not supersede conversations about fertility preservation (note: a sperm sample can be collected immediately, but 1 round of egg retrieval requires 2-4 weeks). Although the fertility preservation process can delay treatment, having conversations about it early on decreases the possibility of treatment starting without a fertility preservation conversation. Regardless of when these conversations happen, patients have the right to know about the potential effects of treatment on their fertility, and providers should focus on giving patients the information that can help them make an informed decision.
At the time that these conversations should be happening, patients are usually overwhelmed with thoughts of their own treatment and survival and are not necessarily focused on what their life is going to look like after cancer. Additionally, many patients are actually unaware of the potential for infertility with cancer treatment, so even informing them of the possibility can be quite a surprise for some.
One of the most effective ways to approach this conversation is by simply normalizing the topic, just as conversations about other important topics—such as advance directives—are normalized. Navigators should find local fertility clinics and other fertility preservation options, educate themselves on the process of fertility preservation, and help patients to manage their expectations, but should leave the actual medical consulting to the experts.
But even when all of these potential barriers are addressed and these important conversations are taking place, one of the biggest reasons patients do not pursue fertility preservation is the cost. The price can be prohibitive, especially for the young adult population, and when the cost of fertility preservation is added to treatment, the burden can be huge.
On top of the cost of initial preservation, many female patients are unaware that they will also have to pay for annual storage, the cost of medication for egg retrieval, and the cost of using the sample through in vitro fertilization down the line. Egg/embryo freezing ranges from about $6500 to $15,000 per cycle, and storage runs about $300 to $600 per year. Importantly, this is not typically covered by insurance, and providers must ensure their patients understand that.
To help offset the financial burden, local nonprofit organizations often offer small grants, and sometimes medications can be donated from pharmaceutical companies or fertility clinics. Additionally, organizations like the Livestrong Fertility Preservation Financial Assistance Program can help patients with the high costs of fertility preservation.
Financial advisors at fertility clinics can often provide insight into local organizations that might be able to help, and these fertility clinics might also offer complimentary or reduced-cost consults (and will often expedite the process of getting a patient in for a consult if a cancer diagnosis is made clear). Additionally, financial assistance from local organizations can be used to pay for other bills while freeing up the funds to pay for fertility preservation.
Sometimes insurance companies will deny claims related to fertility preservation because it automatically implies an infertility diagnosis, but iatrogenic infertility (infertility caused by a necessary medical intervention) is a completely different issue and might be covered for some patients. Navigators should always encourage their patients to call their insurance company to inquire about coverage, and patients should always be reminded that a cancer diagnosis does not equal a diagnosis of infertility.
Oncology navigators should be prepared to expand their current role to meet the ever-growing needs of patients undergoing genetic testing, particularly direct-to-consumer (DTC) genetic testing, according to Kelly Owens, PhD, Marleah Dean Kruzel, PhD, and Jennifer Klemp, PhD. With the explosion in popularity of DTC genetic testing, navigators play a critical role in educating patients about the benefits and drawbacks of these convenient (but sometimes misleading) at-home tests.
Genetic testing is increasingly being used for shared decision-making in cancer treatment. Results of these tests serve to guide therapeutic decisions, underlining the need for enhanced cancer genetic education and risk assessment. Since the navigator is often the first point of care for a patient with cancer, he or she is often the first provider to be asked about genetic testing. Collecting and assessing a patient’s personal and family history can identify the patients who meet professional organizational guidelines for testing, but more and more, patients are inquiring about DTC genetic tests.
According to the FDA, in vitro diagnostics that are marketed directly to consumers without the involvement of a healthcare provider are calld DTCs (eg, 23andMe). DTC genetic testing is now commonplace, but that does not mean it is widely understood.
Without adequate genetic counseling, interpreting the results of broad DTC tests can be confusing and stressful, and the array of possible outcomes from these tests can bring up a variety of issues. For example, pathogenic/likely pathogenic mutations are not typically followed up with sufficient discussion to ensure patients understand the information they have been given, and when it comes to variants of uncertain significance, as the name implies, the “uncertain” impact of these mutations on outcomes can lead to considerable anxiety and confusion.
Another commonly misunderstood aspect of genetic testing is that not all mutations are the same. For example, some mutations lead to a very high risk of breast or ovarian cancer, whereas other mutations are fairly modest in terms of change in risk and may not change treatment or screening plans at all.
On the other hand, narrow DTC tests provide limited information. For example, 23andMe BRCA1/BRCA2 testing looks at 3 mutations in BRCA genes common in Jewish people and does not use the current standard DNA sequencing technology.
When no mutation is found with narrow DTC testing, individuals are left with a particularly false sense of reassurance, not only in regard to whether they have a mutation but also in terms of what kind of follow-up they might need. For example, with 23andMe BRCA1/BRCA2 testing, only 3 mutations in these 2 genes are being tested out of thousands, and other genes associated with breast cancer are not being tested at all.
But one of the biggest problems with these test results is the fact that the quality of the data is too low to actually impact healthcare decision-making. These results are not medically actionable, so they must always be re-tested, a fact many people in the general public are not aware of. False-positives are also common with these tests, and a lack of or insufficient genetic counseling about what to do with this information only compounds these issues. And although false-positives occur often, false-negatives (and a false sense of security) are potentially more concerning.
All signs only point to the expansion of DTC testing (particularly into defining genetic risk for other malignancies such as colorectal cancer), so navigators should be familiar with the intricacies of these tests and should be prepared to explain the differences between the often contradictory sources of information available to patients.
Adding to the general confusion about DTC testing is the stark contrast between what is published by the medical community and what is published in the mainstream media. Cancer research articles are full of technical jargon and are often inaccessible to patients and the general public, whereas media coverage surrounding these studies is accessible and easy to read but is often unreliable and sensational in presenting the same information.
Navigators can teach patients to empower themselves by evaluating the health information they find online. To do this, they can ask themselves certain questions:
- What is the source of the health information (.gov/.edu/.org)?
- Who evaluated the health material before it was posted online?
- When was the material last updated?
- Are there exaggerated statements?
- Are outside experts quoted?
- Is context for the issue provided?
Sharing this list of questions with patients in the form of a handout can be helpful, as can conducting practice Internet searches, walking through each of these specific questions and their answers. These can be useful tools that navigators can employ when teaching patients to effectively evaluate digital health information on their own.