Longtime oncologist Lidia Schapira had always been struck by the wildly different ways her patients responded, both emotionally and psychologically, to their cancer diagnoses. She noticed something else too: The way people thought about their illness seemed to shape their experience -- including their physical response to pain and side effects.
"I've had so many people stuck in a catastrophic way of thinking that prevented them from seeking more sources of support," said Schapira, MD, and director of the Cancer Survivorship Program at Stanford Medicine. "But cancer can also inspire some people to come together and care for each other, to live through and even grow from, these situations."
Schapira hadn't had the opportunity to put her observations through scientific rigor until she met psychologist Alia Crum, associate professor of psychology. Crum runs Stanford's Mind & Body Lab, which focuses on how mindsets affect outcomes both within and beyond the realm of medicine, and has studied how beliefs can alter experience with other physical ailments.
Together with lead author Sean Zion, former Stanford graduate student in the Mind & Body Lab, and other collaborators, Crum created the first targeted digital mindset intervention -- an interactive online course -- for early-stage cancer. They found early, self-reported evidence that patients who underwent the intervention saw improvements in their quality of life. Results of the study, which, Schapira admitted, exceeded her expectations, were published this month in Psycho-Oncology.
"Not only did it improve outlook, the intervention improved the experience of physical symptoms," Schapira said of the subjects' less-bothersome side effects and a decrease in pain levels. "If you are able to actually help your body feel it less or have it bother you less, you are doing yourself an enormous favor. As an oncologist, I can tell you that's a big deal."
The mind-body connection
Crum and her team had previously shown how mindset -- core assumptions about the nature and meaning of illness -- can dictate the body's response to illness and treatment. For instance, they demonstrated how beliefs can alter patients' side effects while taking a powerful course of allergy medications. Those who were told at the outset that side effects of the medication were a positive sign that the body was responding to treatment were able to adopt a mindset that ultimately desensitized them to the typical symptoms from treatment, such as rashes, hives, swelling and stomach pain - as opposed to those who were told that symptoms were merely a side effect of the medication.
Cancer was an uncharted area for Crum and she was eager to explore that with Schapira. They worked with colleagues to design a trial that would test out a tantalizing hypothesis - that changing a patient's mindset about their cancer could produce actual lasting improvements to quality of life amid one of the most stressful and frightening experiences of their lifetimes.
"I'm an interventionist at heart," Crum said. "We never really know how valuable a mindset is until you try to change it."
Zion had previously worked with Crum and other researchers in the Mind & Body Lab to characterize common mindsets about cancer. They theorized that adopting a mindset change about cancer from "cancer is a catastrophe" to "cancer is manageable," or about the body ('My body is capable ' vs 'my body is an adversary') could be transformative.
Crum and Schapira designed an interactive online course on cancer mindsets for a large group of newly diagnosed cancer patients undergoing treatment for the first time. They wanted to know whether mindsets matter in the context of cancer outcomes, whether they can be swayed and if such changes would make a measurable difference, behaviorally, socially, emotionally and physically.
The team enrolled 361 participants, all of whom were recently diagnosed with various non-metastatic cancers who were undergoing systemic treatment. For 10 weeks, half the participants watched a series of short videos featuring experts in psychology and oncology as well as cancer survivors, who spoke about how their mindsets changed throughout and after their treatment, and the challenges they faced along the way. Participants then answered prompts. In the final phase of the intervention, they were asked to write a short letter to a recently diagnosed cancer patient, sharing what they had learned from the experience, including the role of their own mindsets. The other half received just the question prompts without the modules or other materials. A follow-up assessment showed these mindset changes persisted after the end of the intervention.
Participants who went through the modules increased their health-related quality of life, such as their emotional well being, physical health and general functioning by 10%, as measured by changes in industry-standard scales. They also found significant improvements in coping skills and patients' self-reported physical symptom distress decreased too, indicating that overall pain level and side effects were less bothersome. Results from the intervention, which took participants only 2.5 hours to complete, were comparable to those seen after longer, more intensive treatments, such as a 12-week course of cognitive behavioral therapy.
A future cancer treatment?
The study's authors emphasized that there are no "correct" mindsets when it comes to a cancer diagnosis. The goal was to make participants aware that they have a mindset, and they could choose to shift it should they so choose.
The next study, already in the planning phase, will need to replicate these results with a larger and more diverse sample - the current group skewed 82% female and 85% white. Scientists will also be measuring physiological changes over time, rather than a model solely reliant on self-reporting. In the future they also aim to tailor the treatment to other conditions, including patients with metastatic cancers.
The team hopes that, with continued positive results from subsequent studies, a version of this treatment could one day be prescribed directly by physicians to cancer patients as an upstream intervention tool that can be deployed before symptoms of emotional trauma have taken root. It could serve as an adjunct to other forms of cognitive therapy.
"If we can make the treatment phase less traumatic with fewer symptoms needing to take fewer adjunct medications, I think the path out of cancer treatment into survivorship will be easier as well," said Schapira.
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