Navigation-based interventions designed to address the financial and insurance needs of adolescents and young adults (AYAs) with cancer might significantly decrease their financial burden, according to Anne C. Kirchhoff, PhD, MPH, associate professor of pediatrics at Huntsman Cancer Institute, University of Utah.
At the 2020 ASCO Quality Care Symposium, Dr Kirchhoff discussed one such intervention that she and her colleagues are currently developing as part of a randomized controlled trial (RCT) that will launch soon.
“AYAs with cancer tend to experience a lot of financial hardships and insurance concerns as they go through their cancer treatment,” she said. “So this is an important age group to consider for studies of financial hardship.”
Understanding AYAs with Cancer
The National Cancer Institute defines AYAs with cancer as those diagnosed between the ages of 15 and 39 years. “This is a young population, and most of them tend to be healthy prior to their cancer diagnosis,” she said. “So they tend to have very limited experience with insurance, medical costs, and the healthcare system prior to their cancer.”
Studies show that AYAs with cancer experience significant material and psychological hardships both during and after their treatment; they are more likely to file for bankruptcy than older patients with cancer, and worries about the cost of treatment pose an additional—and substantial—burden.
“Studies also show that AYAs engage in behavioral strategies to try to manage their out-of-pocket costs, such as skipping medications more often compared to individuals in the same age range without cancer,” she noted. “All of this is very worrisome, as this affects their access to care during their cancer treatment.”
Designing the Intervention
In designing their study, Dr Kirchhoff and her team sought to improve health insurance and cost literacy among AYAs with cancer. “Health insurance literacy is helping patients make informed decisions about using their health insurance coverage to really optimize it,” she explained. “Cost-related literacy is similar but is focused on helping patients understand financial concepts specific to cancer care.”
More specifically, health insurance literacy helps patients to understand important insurance terms (eg, copay, deductible), as well as consumer protections and what services are covered under different types of plans. Cost-related literacy is more focused on helping patients make informed medical decisions while better understanding the cost of their care.
The study will be set within the Huntsman-Intermountain Adolescent and Young Adult Cancer Care Program, a navigation program established in Salt Lake City in 2016. “When we first launched the program, we did a patient needs assessment and heard from many patients that both insurance and cost issues were a big concern for them as they were going through their cancer treatment,” she said. “So that really set the stage for my research team to begin thinking about strategies that we could develop to improve health insurance and cost literacy for patients in our program.”
The intervention is designed as 4 one-on-one sessions lasting between 30 and 45 minutes each. Sessions will be delivered via telehealth between a patient and a navigator and will focus on increasing knowledge around insurance and costs, helping patients feel more self-confident in regard to effectively navigating their care, and addressing any barriers that might be standing in the way. “Then, each session closes with a ‘hook’ to help them get excited about the next session,” noted Dr Kirchhoff.
Session 1 starts with the core concepts of insurance and teaches patients about different types of coverage and insurance terms. This is followed by an activity to help them understand out-of-pocket costs, with a final hook: “how to understand your insurance card” (to be addressed in session 2).
All 4 sessions are designed similarly, with session 2 focusing more on each patient’s specific plan (and where to go for information they might need during treatment), and session 3 teaching them about appeal issues and consumer protections (including issues related to the Affordable Care Act and other important policies like the Family and Medical Leave Act, Americans with Disabilities Act, and COBRA). Patients are also given a summary sheet and list of important terms after each session.
The final session aims to pull everything together and instill confidence in managing care costs. “We review cost-sharing mechanisms for patients and talk about different trade-offs that they may face if they’re looking for different types of insurance, such as lower premiums versus higher out-of-pocket costs,” she said. “We also give them some tools around having cost conversations with their providers.”
Ready to Launch
According to Dr Kirchhoff, the intervention is “packaged and ready to go,” and the soon-to-launch RCT will evaluate the intervention’s feasibility and acceptability compared with usual navigation care.
“We’re asking patients to do quite a bit as they’re going through their cancer treatment, but around something that’s very important to them,” she said. “So I think we’ll learn a lot through this RCT. We’ll also be looking to see if there are improvements in insurance and cost literacy.”
Currently, the program is designed only for insured patients in treatment, but the researchers hope to soon adapt the intervention to include uninsured patients, as well as survivors of AYA cancer and their caregivers.
“Obviously there’s a lot going on in the insurance landscape in the US, potentially around the Affordable Care Act, so we’re also keeping an eye on that,” she added. “We hope that we’ve designed this intervention in a way that parts of it can be easily refined depending on what happens in the future, so that we can use it for patients with cancer going forward.”