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Improved Immunotherapy Education Needed for Patients to Grasp Benefits, Risks


Survey responses from patients with advanced cancer revealed that there were gaps in knowledge across various aspects of immunotherapy treatment, including about side effects and curative potential.

Surveying a group of patients with advanced cancer, a group of researchers has identified room for improvement in educating patients on the risks, benefits, and curative potential of immunotherapy.

The findings highlight the benefit of providing patients with educational tools so they can better understand what to expect with immunotherapy treatment.

All 105 patients who responded to the 9-question survey had received immunotherapy for either stage IV or unresectable stage III melanoma or non-small cell lung cancer (57 had melanoma and 48 had ung cancer). Immunotherapy treatments included pembrolizumab, ipilimumab and nivolumab, and atezolizumab.

Participants had a median age of 69 years and 33% were female. Most had completed at least a year of college (76.7%) and 73.3% felt “very” or “extremely” confident filling out medical forms.

Survey responses revealed that there were gaps in knowledge across various aspects of immunotherapy treatment, including how immunotherapy works. For example, when asked if immunotherapy and chemotherapy both work by killing all rapidly dividing cells in the body, approximately 25% of patients answered “true.”

Some patients also showed misconceptions in the side effects associated with immunotherapy, including if side effects are always mild and reversible, if treatment can affect any organ, if medications like steroids are sometime needed to control side effects, and when the side effects can occur.

“Participants in this study lacked awareness about the timing, severity, reversibility, and presentation of side effects, knowledge deficits that might affect their behavior with regard to recognizing and seeking care for potential immune-related adverse events,” explained the researchers.

Across the respondents, those with melanoma were more likely to know more about immunotherapy than those with lung cancer. Based on a knowledge score out of 100, patient with melanoma had a mean score of 74.7 compared with patients with lung cancer who had a mean score of 62.3.

Notably, a significant number of patients reported that they believed there was at least a 25% chance that immunotherapy would cure their cancer.

“Understanding of the goal of therapy is an important component of prognostic awareness. Patients with accurate understanding of the goal of their cancer treatment are more likely to receive care that is consistent with their preferences at the end of life,” wrote the researchers, who added, “The finding that most patients with melanoma (58%) perceived immunotherapy as curative likely reflects oncologists’ warranted optimism regarding the long-term durable responses that a significant minority of patients experience. Given the heterogeneity of possible treatment outcomes, however, future research should investigate how to best communicate uncertainty to patients.”

Approximately 1 in 3 patients when surveyed said that curing their cancer was the primary goal of their treatment, and 19% of patients with melanoma reported their oncologist telling them immunotherapy would cure their cancer.


Petrillo L, Zhou A, Sullivan R, et al. Knowledge about risks, benefits, and curative potential of immunotherapy among patients with advanced cancer. The Oncologist. Published online August 18, 2021. doi: 10.1002/onco.13945

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