Patients With Cancer Say They Want More Info on Adverse Events

Pam Harrison

November 25, 2019

At least one third of patients with cancer wish they had known more about the risk of potential adverse effects from their treatment before they were exposed to it, according to findings from a nationwide survey.

"Nearly all patients in the survey felt confident about their treatment decisions, but a sizable number also expressed a clear need for more information about potential side effects," senior author Reshma Jagsi, MD, DPhil, professor of radiation oncology, University of Michigan, Ann Arbor, said in a statement.

"More in-depth patient counseling on these side effects could help us better prepare our patients for changes to their quality of life," added lead author Narek Shaverdian, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York City, in the same statement.

Results of the survey were published online November 20 in the Journal of Oncology Practice.

Web-Based Survey

The Web-based survey was conducted in patients with cancer across the United States who had been treated with radiation therapy among other modalities within the past 5 years.

A total of 403 patients responded to the survey, which was sponsored by the American Society for Radiation Oncology (ASTRO).

"Among all respondents, 82% reported having enough information on what adverse effects to expect before [radiation therapy]," investigators report.

Nevertheless, 37% of patients who were treated with radiation experienced radiation effects that they wished they had been better prepared for before receiving therapy.

"Similarly, 36% and 34% of patients treated with chemotherapy and/or surgery, respectively, experienced adverse effects that they wished they had known more about," the authors indicate.

The most notable of the adverse effects of radiation that patients wished they had known more about prior to undergoing treatment included skin toxicity, gastrointestinal symptoms, and fatigue.

Among the patients who received chemotherapy, the main adverse events they wished they had been better prepared for were nerve damage, gastrointestinal symptoms, and fatigue.

Among patients who underwent surgery, the main adverse effects they wished they had been better prepared for were postoperative pain and nerve damage or numbness.

"The most frequent adverse effect concerns that patients had before undergoing radiation included feeling tired (56%), feeling weak (50%) and skin burning (46%)," researchers report.

However, approximately 30% of those who did receive radiation noted that feelings of being tired or experiencing changes to their energy level were worse than they had expected.

That said, significantly fewer patients treated with radiation alone reported that fatigue, weakness, and pain were worse than they had expected compared with those who underwent chemotherapy and/or surgery, the researchers point out.

The mean rating of severity of reported side effects among all patients was 45 out of 100 (where 0 was minimal and 100 severe).

Not surprisingly, patients who underwent all three types of treatment (radiation, chemotherapy, and surgery) had a higher mean rate of severity of adverse events than patients who had radiotherapy alone (51 vs 37, P =.01).

In the subgroup of patients who received chemotherapy or surgery, the mean perceived severity scores were 63 and 47, respectively.

"The data indicate that patients' experiences with radiation adverse effects are mostly in line with expectations because most patients either did not experience adverse effects or found them to be as expected or better than expected," researchers write.

However, previous research has shown that patients with cancer really do want to know about all possible adverse effects from treatment, but many report not having received sufficient information from their healthcare providers, the researchers note.

"How actual adverse effects compare with expectations may be of greater impact to patients than the absolute severity of adverse effects," the authors comment.

"Our finding of nearly one in three patients who experienced unexpected toxicities regardless of treatment modality should be a call to action to improve and increase access to resources that can reduce the number of patients who feel inadequately informed about treatment toxicities," they add.

The survey showed that 55% of patients talked to their primary care physician about their treatment options, and 64% of those who did so noted the advice of their physicians to be "very important."

Other common sources of information used by patients to help with their treatment decision included medical or cancer-related Web sites (50%); family and friends (33%); and cancer support groups (20%).

The study was supported by the American Society for Radiation Oncology. Jagsi declared she has stock and other ownership interest in Equity Quotient, has served as a consultant to Amgen and Vizient, has received research funding from AbbVie, and has received travel expenses from Amgen.

Journal of Oncology Practice. Published online November 20, 2019. Abstract

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