One of the hurdles, according to the study’s lead author, is that many patients with cancer are worried about receiving a placebo in a clinical trial.
Patients with multiple myeloma often do not participate in clinical trials and may have a skewed perception of them because of anxiety and depression, according to results of a recent study.
Neha G. Goyal, a staff psychologist at UCSF Helen Diller Family Comprehensive Cancer Center in San Francisco, told CURE® that patients with multiple myeloma often experience anxiety and depression because of their disease. Multiple myeloma can be a treatable cancer, but it is considered incurable, which can bring up many different emotions because of the uncertainty, she explained.
“Even in those periods where people are not in treatments, there is this ongoing uncertainty or fear of … relapse that can make one feel anxious. So even when (patients) are on treatment (or) off treatment, there are these fears or thoughts that are coming up that can really contribute to anxiety,” Goyal said. “We see this in other cancers, but I think there’s a unique aspect of multiple myeloma that make one more prone to feeling some of these emotions of anxiety and sadness.”
Psychological side effects such as depression and anxiety can influence a patient’s everyday life, Goyal explained, so could it also affect their ability or desire to participate in a clinical trial?
Kimberly Papay Rogers, director of research at Cancer Support Community and lead author of the study, explained in an interview with CURE® that there are thousands of clinical trials, with a main goal to improve patient outcomes and increase quality of life. However, participation remains low, so it is important to understand the barriers patients might face regarding perception and participation.
“A lack of participation in clinical trials can really prevent progress in these areas. And obviously better outcomes are of the utmost importance to patients and their families and health care providers. Engagement in clinical trials is really crucial to keep progress moving forward,” she said.
The study included 625 patients with hematologic cancer, mostly multiple myeloma (46.4%), who completed an online survey to assess their perception of clinical trials and measure anxiety and depression. Patients (median age, 60.1 years) were mostly female (54.9%) and non-Hispanic White (86.7%).
These findings shed light on fears and perceptions that patients are feeling, Rogers said. For example, many patients are worried about receiving a placebo. However, most trials are not placebo controlled.Instead, new treatments are compared with the standard of care, she said.
Interestingly, the study also demonstrated that these perceptions were higher among those who had higher levels of anxiety and depression, but more research is needed to fully understand why these relationships are observed and what they mean. Rogers did point out that “in this survey sample, 21% of patients had elevated levels of anxiety and 27% of patients had elevated levels of depression, which is higher than what we see among adults in general in the United States.”
Goyal explained that feelings of anxiety can make a person worry about the “what ifs” — for example, “What if the trial doesn’t work?” “What if I have unexpected side effects?” These uncertainties are
“a breeding ground for anxiety,” she said, and patients might rather go down a path, or treatment, that is more well known.
“As this study so nicely pointed out, when we are feeling depressed or when we are feeling anxious, we have certain perceptions, (and) we view the world in a certain way when we’re feeling more anxious and depressed. And so those negative perceptions can also impact one’s willingness to join a trial,” Goyal said.
Both Goyal and Rogers agree it is important to understand the factors and barriers to participating in a clinical trial. These trials allow for advancements and new treatments in myeloma and other cancers.
“It’s important to understand what the reasons or barriers are to patients participating in clinical trials … to be able to directly address those barriers so that we can get more patients into these clinical trials and it can sort of … speed up the process in the development of these treatments and (then) those treatments coming out on the market for other patients,” Goyal said.
Rogers says that is what the study allowed them to do.
“I think it’s important to recognize the end goal is always to minimize barriers that may stand in the way of people accessing clinical trials. But we can’t really work to minimize those barriers until we understand them better. That’s what this study was about and why we feel it’s so important,” Rogers concluded.
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