By Cody R. Barnett, MRA Director of Communications 

If you close your eyes and imagine what a melanoma researcher looks like, Betina Yanez, PhD, is probably not what you imagine. That’s because Yanez, a health psychologist by training, isn’t your typical melanoma researcher. Instead of researching new treatment targets or experimental combination therapies, she focuses on patient experience and quality of life.

“So much attention is focused on extending longevity, which is certainly important,” says Yanez. “But sometimes we lose sight of the experience, or the journey, in the process. My work is focused on improving the quality of life and symptom burden of cancer patients and survivors as they go through treatment and live their lives.”

In melanoma treatment, finding an effective therapy that also allows a patient to have a high quality of life is the ultimate goal. However, like most things in life, melanoma treatments all come with unique tradeoffs that range from annoying to life-threatening.

For example, when being treated with checkpoint immunotherapy, you may need to take time off work or miss an event with your children to instead receive your infusion. You also could develop a mild rash or just feel extra tired. While annoying – these are all manageable. On the more serious end of these tradeoffs, immunotherapy can, in some instances, cause the body to attack healthy tissues. Researchers call these immune-related adverse events (irAE) – and ignoring these can lead to life-altering or life-threatening complications.

In 2018, in partnership with the American Cancer Society, MRA funded five research awards aimed at maximizing the overall outcomes for patients treated with checkpoint inhibitors and minimizing toxicity by finding ways to better predict, prevent, and/or minimize these irAE. Dr. Yanez applied and was granted, one of these awards 

The idea for the project came from a meeting between herself and Jeffrey Sosman, MD, and Nisha Mohindra, MD. Sosman and Mohindra, both medical oncologists, were concerned that their patients were underreporting side effects and were having poorer outcomes and quality of life because of it. With a clear goal in mind, they started to think of how they could intervene.

“We first started to think of this research project three or four years ago, but we couldn’t find the right funding mechanism,” says Yanez. “Then – two years later – when we saw the funding announcement from ACS and MRA, it was perfect timing.”

In her pilot study, Yanez proposed creating an evidence-based web platform called OncoTool that would improve the management of immune checkpoint inhibitor side effects. If effective, the program could improve the care of patients receiving immune checkpoint inhibitors and may improve clinical outcomes such as disease progression and overall survival.

“What we want to know is if we can catch adverse events early – before they become serious – by engaging patients in reporting their side effects in-between visits to the cancer center,” says Yanez. “Once identified, maybe we can manage these side effects – improving patient quality of life while reducing treatment discontinuation and thus improving patient outcomes.”

When patients enroll in the clinical trial testing OncoTool, they get access to a website with patient-friendly videos and information about melanoma, checkpoint immunotherapies, and side effects that they may experience. In addition to serving as a resource hub, OncoTool is also a symptom monitor. Each week, patients are asked to describe any side effects they may be experiencing. If they score above a threshold for a specific adverse event – the system then inserts a flag directly into their electronic health record (EHR). Yanez and her team are then able to track how providers look at the alert and what they do with it. 

“What we are really doing here is creating additional touchpoints for patients to let their doctors know what’s happening with them,” says Yanez. “By helping patients understand how their treatments work and what to look for – we can empower them to play a larger role in their care.”

Right now, the feasibility study is moving forward with approximately 50 patients so far enrolled. Hopefully, after enrolling at least 60 patients – they will be able to demonstrate that OncoTool does improve care. “The dream scenario is that after the pilot study, we can then test this approach in a wider, implementation trial.”

An interesting benefit of improving the patient experience is that it can improve their health too. “When patients have a better quality of life they can stay on their treatments longer,” says Yanez. “They aren’t ending up in the emergency room with serious adverse events that require treatment discontinuation and steroid therapy. This work helps saves lives.” 

This post was originally published by the Melanoma Research Alliance. It is republished with permission.