Welcome to the Virtual Midyear Conference!
Our first-ever Virtual Midyear Conference took place on May 14-17 on a brand-new platform for us. As attendees have come to expect from the twice-yearly AONN+ conferences, this one too was packed with informative general sessions and breakouts and dynamic interactive opportunities with peers from across the oncology space. And there was time for fun, too!
As the weekend unfolded, conference presenters and attendees experimented with novel forms of meeting attendance and participation. Communication was boosted by the live chat box as well as traditional social media platforms such as Twitter.
“Cocktail hours” and impromptu gatherings held in Zoom rooms gave attendees a chance to socialize with others from around the country and the globe. These new ways of engaging brought people together in planned and some spontaneous gatherings.
Even before the official start of the meeting on Thursday, attendees had received a welcome surprise delivered to their homes. A box of relevant session materials and conference “swag” bore the message, “You couldn’t come to us, so we came to you,” and set the tone for attendees as they prepared for the exciting virtual experience that was about to begin.
Preconference Sessions Offered Insights in Anticipation of the Official Conference Opening
As in the past, the hours before the AONN+ Virtual Midyear Conference was officially opened were filled by preconference sessions that offered added value for attendees. These preconference sessions featured detailed examinations of some of the issues most important to navigators.
Policy and Advocacy Boot Camp
Through its Policy and Advocacy Committee, AONN+ offers resources for navigators, and Jamie Callahan, BSN-RN, OCN, CBCN, and Clara Lambert, BBA, OPN-CG, shared insights on how to enact change in the healthcare realm. Beginning with a primer on federal, state, and local governments and their functions, they went on to discuss personal and community advocacy.
As they explained, steps involved in advocacy begin with identifying the issue and the players involved, including whether the matter should be addressed at the federal, state, or local level. From there, the advocate should identify an impactful story related to the issue and practice telling it. Next, find supporting data, keeping in mind the importance of research and using credible, timely sources, and identify an audience to target. By doing their homework, advocates can determine a solution to the problem, and then take action to implement it, the women said.
Health Equity for Gender and Sexual Minorities
With 9 million individuals identifying as lesbian, gay, bisexual, transgender, or queer (LGBTQ) living in 99% of US counties, it is imperative for navigators and other healthcare providers to be knowledgeable about the unique needs of these communities. Mandi Pratt-Chapman, PhD, MA, HON-OPN-CG, Associate Center Director, Patient-Centered Initiatives and Health Equity at The George Washington University Cancer Center, explained how providers can deliver equitable care to the LGBTQ community.
Ethical considerations must come into play when treating gender and sexual minorities, as members of these communities experience the highest tobacco and alcohol use; have more mental health challenges, including anxiety, depression, and suicidal ideation; often engage in avoidance of healthcare because of stigma; and because of familial rejection and stigma, they experience high levels of distress, with low levels of support, Dr Pratt-Chapman said.
Staff training is integral to an inclusive environment, said Dr Pratt-Chapman, and she offered practicable advice for providers, such as echoing the patient’s language, avoiding making assumptions, and acknowledging and correcting their own mistakes.
Official Start of the Conference!
The conference officially started on Friday with introductions and welcoming remarks from members of AONN+ leadership, including Penny Daugherty, Monica Dean, Emily Gentry, Sharon Gentry, Danelle Johnston, Peg Rummel, and Lillie Shockney.
Emily Gentry and Monica Dean gave an overview of the navigation certification process and the committees that help to carry out the work of the Academy.
Program Director Sharon Gentry used her time to explain why local navigator networks (LNNs) are so important to building connections among navigators, sharing best practices, and disseminating knowledge. And Lillie Shockney encouraged everyone to look at the fantastic articles and publishing opportunities in the Academy’s 2 publications, CONQUER: the patient voice and the Journal of Oncology Navigation & Survivorship.
A look at the agenda shows the breadth and depth of the topics covered in this conference. Here are some highlights from a selection of the conference sessions.
Mental Health Matters for Patients with Cancer: Lightening the Load for Patients and Families
Jennifer Bires, LCSW, OSW-C, of Inova Schar Cancer Institute, Washington, DC, discussed the importance of mental health considerations in oncology care. As she stated, this is a topic that has only become more crucial in light of the social and psychological disruptions attendant with the pandemic crisis.
Patients battling cancer now must not only deal with the physical impacts of their illness, but also the psychosocial fallout. As is well-known, distress often accompanies a serious diagnosis, such as cancer. Anxiety accompanies the diagnosis, with fears about end of life and changes in the body being among the more common responses.
Highlighting psychosocial standards of care from the Institute of Medicine, National Comprehensive Cancer Network, and Commission on Cancer, Ms Bires said studies have shown that 1 in 3 patients experience clinically significant levels of distress.1,2 Cognitively, stress can result in impaired memory, confusion, lack of creativity, worry, and decreased sense of humor. Psychological effects include anger, depression, anxiety, pessimism, and irritability, according to Ms Bires.
Behavioral symptoms of distress can manifest as overeating, crying, lethargy, increased intake of alcohol, smoking, and teeth grinding. Physical symptoms can include muscle aches and headaches, chest pain, and sexual dysfunction.
Affecting 15% to 25% of patients with cancer, depression is exhibited in various ways. Things that navigators can look for to gauge whether patients are experiencing depression include expressions of an ongoing sense of hopelessness or sadness, sleep changes, weight changes, fluctuations in mood, and suicidal ideations or attempts at suicide.
It can be demoralizing, said Ms Bires, for patients to receive yet another diagnosis when they have just been diagnosed with cancer, so this is where patient history can be especially helpful in determining a course of action. Learning about a patient’s history and how they have dealt with stress in the past is very important in predicting how they will deal with the stressors of a cancer diagnosis. This information can go a long way in getting patients adequate treatment. Ms Bires added that it is important to follow patients with a history of depression more closely. Treatments for depression can include medication, talk therapy, exercise, and nutrition.
Anxiety is a uniquely human emotion, said Ms Bires, and it is the top issue she sees in her patients. Anxiety is defined as a multisystem response to a perceived threat or danger. It is the reflection of biochemical changes in the body, the patient’s personal history and memory, and the social situation at hand. Anxiety may arise from the anticipation of future events and can be an acute or chronic issue. Many patients experience chronic anxiety in part because illness has a long trajectory. History is important here as well for determining how to treat a patient.
Ms Bires explained the ways in which the Acute Stress Reaction is triggered when the brain detects a life-threatening or very frightening experience. Physiological reactions involve the sympathetic nervous system to release hormones. Helping patients understand some of these physiological responses may make it easier for patients to manage their anxiety and fear. Patients can manage anxiety through relaxation techniques such as deep breathing, yoga, and meditation. It is better to practice these techniques when not feeling anxious, Ms Bires advised. Talk therapy and cognitive therapy can also be useful as can changes in diet and nutrition and exercise.
Brain fog is another frequently occurring response. A concept familiar to patients undergoing cancer treatment, brain fog involves changes in memory and cognition. It can be very distressing for patients. It is unclear what causes the cognitive impairment, and patients are affected to different extents. Assessments can be done, and interventions include cognitive-behavioral and pharmacologic, among others.
Patients also may experience chronic insomnia, which can be debilitating. Patients with cancer are 3 times more likely than the general population to suffer from insomnia, with sleep medications commonly prescribed. Addressing issues with sleep become more critical considering the possible effect on immune function for patients with cancer, said Ms Bires. She provided some tips, such as staying awake until bedtime, methods for dealing with awakening during the night, and practicing good sleep hygiene by doing things such as rising from bed at waking time. These suggestions can prove helpful for patients who struggle with insomnia, she said.
Personality disorders in patients can be difficult to manage effectively, and illness tends to exacerbate them. Spanning numerous types, personality disorders have some common features, including skewed sense of self and others, problematic relationships, emotional intensity or instability, and lack of impulse control. Often paired with addiction, personality disorders are only intensified by substances. These patients present a precarious treatment situation, often requiring expert evaluation. It is crucial for the treatment team to work to ensure that the patient is well cared for.
High anxiety or personality disorders can make treating patients difficult. As difficult as psychosocial issues can be for patients, providers may also suffer, as these patients often need more time or more intensive attention. Ms Bires said these time-consuming issues interfere with care, causing irritation and exhaustion, along with team conflict, often challenging professional competency. Share strategies for dealing with patients facing psychosocial disorders, including setting limits, removing emotion, and making the patient a collective responsibility of the team.
Ms Bires pointed out that communication is 10% verbal, 35% tone, and 55% nonverbal. Listening is an invaluable skill with these patients, she said, and “removing emotion” can be a highly effective technique for working with anxious, angry, or difficult patients. It is also important to support the team members who are supporting challenging patients. Hearing with empathy and being present can often be enough in certain situations.
Making time for self-care is crucial and taking care of patients cannot overshadow self-care for navigators, Ms Bires said. Through strategies involving breath work, exercise, relaxation, and humor, among others, navigators can ensure they are in sound shape to provide care when patients need it most.
- Carlson LE, Angen M, Cullum J, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer. 2004;90:2297-2304.
- Zabora J, BrintzenhofeSzoc K, Curbow B, et al. The prevalence of psychosocial distress by cancer site. Psychooncology. 2001;10:19-28.
Community Health Workers: Champions of Early Detection and Screening
Providing a real-world illustration of the value of community health workers (CHWs), Anne Conners, MPH, MA, of MaineGeneral Medical Center and Maine Lung Cancer Coalition, described how their interventions among Maine smokers impacted patient behaviors around early screening and detection of lung cancer during her session at the AONN+ Virtual Midyear Conference. In this project, the CHWs contacted patients and linked them with the other resources in the community engagement strategy.
Stemming from its high smoking rate; rural composition and accompanying geographic barriers to healthcare access; and mitigable environmental risks, such as naturally occurring radon in soil, Maine’s population is disproportionately affected by lung cancer compared with other states. Ranking fifth in the country in the rate of new lung and bronchus cancers and 11th in deaths from these cancers in 2016, Maine’s average smoking rate is 19.8%, well above the US average of approximately 14%, according to Ms Conners.
With these sobering statistics in mind, the aim of the Maine Lung Cancer Coalition is to develop the infrastructure to implement and disseminate evidence-based prevention and early detection services for lung cancer, as well as facilitate early referral and treatment of patients with lung cancer throughout Maine.
While many people are familiar with mammograms, they are not as familiar with lung cancer screenings. By increasing health knowledge and self-sufficiency through outreach, education, informal counseling, social support, and advocacy, CHWs are able to implement effective strategies for better health outcomes, Ms Conners explained. They do this by not only engaging community members and patients, but also providers, policymakers, and insurance providers. With all these stakeholders on board, the efforts of the CHWs become a collaborative undertaking.
“Nothing About Us Without Us”
This idea is one of the guiding principles, said Ms Conners, in undertaking community health outreach. For the Maine Lung Cancer Coalition, its first year of efforts included assessing local environmental health policies and engaging in policy development, along with the development of a community action plan. In addition, it established an advisory group, conducted interviews, and assessed messaging for optimization.
In the second and third years, the coalition launched a Primary Care Pilot, involving 4 practices through which CHWs were linked to patients and healthcare providers, and employed a population risk assessment tool. The CHWs provide education and outreach to at-risk individuals, also tracking patient data and connecting patients with appropriate services. Tobacco cessation plays a central role in prevention efforts.
Results showed that more than one-third of patients engaged in some type of risk-reduction activity after inclusion in the pilot, with radon testing and discussion of tobacco cessation being the most common activities.
Years 3 and 4 of the coalition’s CHW efforts consisted of its Annual Reminder Pilot, which involved sending letters reminding patients to complete low-dose computed tomography (CT) scans. Some patients received outreach from a CHW along with the letter. Among these patients, 86% completed a low-dose CT scan, compared with only 19.6% of patients who only received a letter, according to Ms Conners. 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.
Next week, we will continue the recap with some of the other featured sessions and take an inside look at the interactive CONQUER: the patient voice outreach booth featured in the virtual exhibit hall.