This is part 3 of our 3-part conference recap and session highlights. Sunday, the final day of the conference, offered more opportunities for education, social connection, and career enhancement. Other highlights included on-demand access to breakout sessions, which allowed attendees to follow their interests independently. Ample time to visit the virtual Exhibit Hall offered another chance to gather information and make connections.
Virtual Exhibit Hall Highlights New Products and Services
For many, the Exhibit Hall is one of the highlights of any conference, and although this year it was moved into the digital space, the assembly of oncology-related products and services was outstanding, with participating exhibitors finding new and creative ways to connect with conference attendees. It was also the day to complete the game card by visiting booths in the virtual exhibition for a chance to win 1 of twenty $25 Amazon e-gift cards!
We were pleased that a large number of attendees stopped by the CONQUER: the patient voice booth to say hello, to ask questions about the magazine, and to learn about some of the new items we have on hand. We received so much positive feedback on the magazine and website, and conference attendees welcomed the chance to speak with us “in person” in the chat room during exhibit hours. A big thank you to everyone who dropped by and everyone who downloaded our conference materials!
Fertility Preservation Discussions: An Opportunity Not to Be Missed
A survivorship and quality-of-life issue for patients with cancer, fertility preservation is a critical issue to be addressed before treatment ensues. Despite this, less than half of oncologists discuss fertility preservation with their patients, according to Megan Solinger, MHS, MA, OPN-CG, Director of Patient Navigation and Adolescent and Young Adult (AYA) Patient Navigator at UMMC Ulman Foundation, Baltimore, MD. Pointing out that American Society of Clinical Oncology (ASCO) guidelines state that all providers should be prepared to discuss fertility preservation before treatment begins, Ms Solinger focused on how navigators can broach the issue with patients during the AONN+ Virtual Midyear Conference. She emphasized that due to the complexity of the issue, it really should be an “all on hands on deck” discussion, bringing all available resources to the table.
Despite the importance of fertility preservation for AYAs (individuals in the child-bearing age group, ie, 15-39 years), multiple barriers deter the medical team and patients from addressing the issue. For the medical team, barriers can come in the form of:
- Providers’ views about fertility
- Assumptions that the patient is not interested or cannot afford fertility preservation
- Lack of knowledge about the processes involved
- Focusing on survival and treatment
- General discomfort with the topic
Patients face their own set of obstacles, including:
- Financial constraints
- Focusing on survival and treatment
- Not having ample time to pursue fertility preservation before treatment begins
- Lack of understanding and knowledge
- Fertility being a distant consideration
- No current desire to have children
- Uncertainty about with whom to inquire
In preparing for fertility preservation discussions, navigators should take the time to educate themselves on options, the processes and costs involved, and available resources, Ms Solinger said. Research local fertility clinics to which patients can be referred, she advised. A free online training program from the Moffitt Cancer Center, ECHO (Enriching Communication Skills for Health Professionals in Oncofertility), equips clinicians with the necessary skills to help patients traverse the terrain of fertility preservation.
For male patients, cryopreservation of sperm is the main option; prepubertal options for male patients remain experimental. Female patients have a wider array of options, including cryopreservation of eggs or embryos, ovarian transposition, and monthly ovarian suppression, which, like prepubertal options, is experimental, Ms Solinger explained.
A major consideration in fertility preservation, costs for the various treatments are significant. Sperm-banking costs approximately $1000; testicular tissue cryopreservation, $3000; egg banking, $3000; embryo banking, $4000; and ovarian tissue cryopreservation, $12,000. It is important to note, however, that egg and embryo banking carry an additional cost of $6500 to $10,000 for initial preservation. Additional costs come with the annual storage of cryopreserved tissue, in vitro fertilization (IVF), and medications for egg retrieval. Third-party options are even more costly. IVF with donor egg costs approximately $25,000; adoption, $40,000; and surrogacy, $70,000.
Fortunately, resources exist to offset the financial burden. Livestrong has a Fertility Preservation Financial Assistance Program. Team Maggie for a Cure and Verna’s Purse also offer financial assistance for fertility preservation. Local nonprofits may offer small grants, pharmaceutical companies and fertility clinics may donate medications, and oncofertility consultations could potentially be made complimentary, Ms Solinger said. In addition, patients should always be encouraged to check with their insurance companies about whether they cover iatrogenic infertility.
Institutions should enact a fertility preservation policy that applies to any type of iatrogenic infertility. A requirement of Centers of Excellence, such a policy should be easy to follow and access. It should also take into account the LGBTQ population, Ms Solinger said.
The Oncofertility Consortium partnered with FCancer to create Take Charge (letstakecharge.org), an invaluable resource for young patients with cancer, along with their caregivers and healthcare providers. Ms Solinger recommended it, along with the guidelines from ASCO and other organizations.
On-Demand Breakout Sessions Allow Attendees to Follow Their Passions
Although navigators share a common, multifaceted role, their individual interests and areas of expertise vary widely. To ensure all attendees of the Virtual Midyear Conference enjoyed content pertinent to their practices, AONN+ offered 5 breakout sessions available on demand and spanning a range of compelling topics.
Gynecologic Radiation Oncology
Playing a critical role in the treatment of gynecologic cancers, radiation therapy has evolved to reduce treatment times, improve side effects, and provide more targeted treatment. Sharing his knowledge about the treatment, Neil K. Taunk, MD, MS, Chief of Gynecologic Radiation Service and Assistant Professor of Radiation Oncology at the University of Pennsylvania, led navigators through the types of radiation oncology, including external beam radiation and brachytherapy; how it works; acute and long-term side effects; and the features of a quality radiation program.
Thoracic Oncology Navigation
Megan Roy, BSN, RN, OCN, of Penn Medicine, focused on lung cancer in describing the work of a thoracic oncology navigator. Touching on the topics of screening, staging, molecular testing, and treatment, Ms Roy also discussed the stigma associated with lung cancer, as well as the importance of quitting smoking for those who do.
In addition, Cheryl Bellomo, MSN, RN, OCN, HON-ONN-CG, and Amy Jo Pixley, MSN, RN, OCN, ONN-CG(T), shed light on the Cancer Advocacy & Patient Education (CAPE) initiative, the creation of a web-based educational library on lung cancer to enhance patient understanding of diagnostic procedures, diagnosis, and treatment; promote shared decision-making to ensure patients’ values and goals are incorporated into treatment plans; and improve communication among patients, their caregivers, and treatment teams.
Germline and Tissue Genetic Testing
The expanding role of genetic testing in oncology risk assessment, diagnosis, treatment, and prognosis is significant. Providing a primer for navigators, Frank dela Rama, RN, MS, AOCNS, AGN-BC, discussed how germline genetic testing can be considered in many gynecologic and genitourinary cancers, as well as how tissue genetic testing is increasingly used in the personalized treatment of such cancers, particularly ovarian and prostate. Stating that a comprehensive evaluation by a genetics professional is key to ensuring proper testing for patients, he said navigators have the ability to best identify patients who may be eligible for genetic testing and facilitate their referral.
Consisting of collaborative discourse between a provider, a patient, and their caregiver and family to share information and options for deciding on a treatment plan, shared decision-making (SDM) engages patients in their care while incorporating their values and goals, enhances patient satisfaction, and decreases the risk for patient regret, according to Eleanor Miller, MSN, RN, OCN, who presented on the topic. Offering a review of SDM and its background in healthcare, she described opportunities for navigators to engage in SDM, as well as influences and challenges that can arise. In addition, she discussed the impact COVID-19 is having on SDM. Providing practical advice for navigators, Ms Miller outlined communication techniques that provide support while alleviating pressure, also giving navigators a list of resources with which to consult in SDM endeavors.
An integrative, systems-based approach to treating disease, functional medicine takes a holistic view of patient care. Niraj Mehta, MD, discussed the role of physical activity and how inactivity represents a global health problem, as well as how a lack of sleep can contribute to illness in the body. Sharing scientific evidence of its positive effects on the brain, Dr Mehta described how meditation and mindfulness can help the body defend against stress and increase antibodies. In addition, he highlighted the integral role of nutrition in healing and protecting the body from disease.
Direct-to-Consumer Genetic Testing: Journal Reporting, Media Coverage, and the Effect of Both on Patients
In a 3-part presentation, Kelly Owens, PhD, of Facing Our Risk of Cancer Empowered; Marleah Dean Kruzel, PhD, of the University of South Florida, Moffitt Cancer Center; and Jennifer Klemp, PhD, of the University of Kansas Medical Center, took a deep dive into consumer genetic testing products and the possible consequences these tests carry.
Popularized in recent years, DTC genetic tests (such as Ancestry, 23andMe, among others) can be purchased by consumers, who then receive their results from a company, without the involvement of a healthcare provider (HCP). A study on individuals’ use of genetic testing revealed that 76.6% of those who had been tested used a DTC test.1
Although genetic tests are regulated by the US Food and Drug Administration and their laboratory testing standards are overseen by Clinical Laboratory Improvement Amendments (CLIA), DTC tests do not always undergo the same rigors, and patients using them do not receive the genetic counseling that accompanies provider-ordered tests. In addition, DTC tests can be insufficient or inconclusive, providing information that is too broad or narrow and giving false positives or negatives. As proof, in FORCE’s application of XRAY to the topic of DTC testing, it found that 40% of genetic mutations revealed by third-party analysis of DTC testing data were not real. Privacy issues pose another concern with these tests, with the potential for companies to use DNA data for other purposes. From the patient’s perspective, DTC tests are touted on social media, given as gifts, and marketed to children in some cases, which is why XRAY represents an important resource in the quest for digital health literacy.
Funded by the Centers for Disease Control and Prevention, XRAY digs beneath cancer headlines to help patients understand how research is relevant to their individual conditions. With portals for multiple cancer types, the program seeks to remove the barriers posed by technical, inaccessible research articles, as well as dispel unreliable or sensationalized information from the media. To achieve these goals, XRAY ranks an article’s relevance and the strength of the science described within, along with indicating from where along the research timeline the findings have been gleaned. It also provides a plain-language summary, related expert guidelines, and questions to ask HCPs about the content. In addition, XRAY links readers to open clinical trials and related resources, along with rating the accuracy of media coverage.
Navigators can help patients improve health literacy through the “Teach-Back Method,” which has patients repeating essential information from clinicians in their own words. This provides the opportunity for clinicians to reteach, if necessary. The “Ask Me 3 Model” advises patients to ask HCPs the following questions:
- What is my main problem?
- What do I need to do now?
- Why is it important for me to do this?
In addition, navigators can improve digital health literacy in patients by encouraging them to ask of digital sources:
- What is the source of the information?
- Who evaluated the material before it was posted online?
- When was the material last updated?
- Are statements exaggerated?
- Are experts quoted?
- Is context provided?
For more information about the XRAY program, visit www.facingourrisk.org/XRAYS/index.php.
- Carroll NM, Blum-Barnett E, Madrid SD, et al. J Genet Couns. 2019 Nov 20. doi: 10.1002/jgc4.1193. [Epub ahead of print]