Navigating Cancer’s (NC) mission is to improve the lives of cancer patients and those who care for them. That’s why NC attended this year’s ASCO Quality Care Symposium, where researchers and patient advocates shared the latest on issues in the field and practical avenues for change.
The conference dove into hope and end of life planning, financial toxicity, and diversity and inequality in cancer care. Key takeaways are outlined below.
Hope and End-of-Life Planning
It is not standard practice for providers to have advanced care treatment and planning discussions with their patients. However, we hear increasing interest in advanced care planning from practices that use Navigating Cancer. Conversations on this topic can bring numerous benefits to patients and their caregivers. Patients can make better-informed treatment decisions, like whether they should receive palliative care, which has been associated with fewer ER visits and better quality of life at end-of-life. Additionally, it helps patients have their own end-of-life discussions with friends and family. Equally important, is eliciting patient values, goals, and hopes, which is critical for delivering treatment and care that aligns with the patient.
If these conversations are beneficial, why aren’t they happening? Optimistic views are widely held and communicated in oncology care, making it difficult to have end-of-life care discussions. This positive language can mislead patients to make uniform treatment decisions or delay talking to loved ones about important end-of-life topics. Providers typically avoid advanced care conversations because they fear it will take away a patient’s hopes. Taking away a patient’s hope could put them in a state of learned helplessness (“I can’t do anything to improve my predicament”) and/or cognitive dread from not knowing what will happen. It’s reasonable to understand why providers would not want to cause that emotional stress for their patients.
However, Dr. Benjamin Corn found that advanced care planning is not associated with decreased hope. Clinics and providers should consider adopting scaleable and thoughtful ways to have these conversations to help their patients.
Another challenge facing cancer patients is financial toxicity, or the negative impact medical expenses have on a person. Ideally, patients and providers could choose and adhere to the best treatment method solely on the outcome for the patient. But, the cost is a factor that impacts treatment decisions and actions. Patients are put in a position where they have to choose between forgoing treatment, pursuing the most financially viable treatment, or selecting the one with the best potential outcomes. Patients employ coping mechanisms to deal with the financial burden, like non-adherence or making financial cutbacks in other areas of their lives.
Not only do patients pass up on treatment because of the cost, but financial toxicity disproportionately impacts racial minority cancer patients and survivors (The influence of race on financial toxicity among cancer patients).
Patients should not have to choose between their health and financial wellbeing. Moreover, the racial inequalities in cancer care and survivorship, specifically financial toxicity, need to be addressed.
Diversity and Inequality
Inequality in cancer care is not limited to financial toxicity, but disparities have also been found in “time to treatment”. Time to treatment is closely associated with outcomes, meaning that the longer a patient forgoes treatment, the worse their outcomes can be.
Data collection is key to addressing these disparities in cancer care and survivorship. Race, ethnicity, and LGBTQ data are critical for de-aggregating data to identify where disparities exist, which is a first step in addressing the issues. This point is exemplified by a study by Stephanie Navarro that found a grouping of Asian and Pacific Islander populations hid disparities in breast cancer diagnosis. Some providers are hesitant or uncomfortable asking patients about their race, ethnicity, or sexual orientation. Training staff members and/or allowing patients to self-report could be good steps forward in more robust data collection and identifying disparities.
When we realize the true potential of a connected and diverse patient population, we can improve outcomes for all patients.
ASCO highlighted key learnings that can be applied and drive the future direction of NC’s offerings.
Digital health solutions, like NC, can enable clinics and patients to have a scalable and impactful way to conduct end-of-life planning and facilitate conversations to uncover patients’ values and hopes.
Additionally, remote monitoring solutions, like Health Tracker, can help clinics overcome adherence barriers by identifying disparities. For example, Health Tracker can help clinics identify patients who are not adhering to their treatment. This is the first step in uncovering the reason for patient non-adherence. If patient non-adherence is related to financial toxicity, clinics could then strategize with the patient ways to address the problem.
NC’s digital oncology solutions can also help with more robust data collection of race, ethnicity, and sexual orientation by supporting self-reporting. Studies by Duke and Genentech, in partnership with Navigating Cancer, have shown that digital patient solutions can help identify disparities in care management, which clinics can then work to address directly.
- Consistency in care: NC and Duke University School of Medicine partnered on a research project analyzing real-world patient-reported outcomes data regarding pain management among head and neck cancer (HNC) patients as part of our ongoing efforts to address health equity and improve oncology care for patients. The research indicated that 1-in-6 HNC patients in a community oncology setting reported pain. While there were no racial differences in any pain report, white patients were significantly more likely to receive a new prescription for pain management, as were those with Medicare or commercial insurance. (Sociodemographic correlates of patient-reported pain among head and neck cancer patients in a community oncology setting.)
- Accessibility to digital tools: NC and Genentech partnered on a study, which analyzed data from more than 200K people living with cancer, found that most communities of color have limited access and online communication with oncologists on digital health platforms. (When oncology care goes digital: A closer look at disparities.)
A deeper understanding of a diverse patient population will drive better outcomes for all patients and those who care for them.