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Survey of Patients’ Experience With Radiation Therapy for Cancer Finds Some Gaps in Expectation vs Reality


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Narek Shaverdian, MD

Narek Shaverdian, MD

In a study reported in JCO Oncology Practice, Narek Shaverdian, MD, of Memorial Sloan Kettering Cancer Center, New York, and colleagues found that most patients undergoing radiation therapy for cancer reported that anticipated adverse effects did not occur or were no worse than expected.1 However, substantial proportions of patients with cancer across all major modalities of cancer treatment reported feeling inadequately informed about what adverse effects to expect, experiencing adverse effects they wished they had known more about prior to treatment, and having adverse effects that were worse than expected.

Study Details

The study involved findings from 403 respondents to a Web-based survey given from March to May 2018 that used quota-based sampling to provide a nationwide sample of American patients with cancer who received radiation therapy within the past 5 years. The survey assessed patient perception of adequacy of information about adverse effects, severity of adverse effects, and divergence of experiences from expectations. Specific potential adverse effects queried about in the survey included feeling tired; changes to energy level; feeling weak, anxious, or worried; not being able to carry out daily functions/work; limitations in social/recreational activities; disruption to family life; pain; skin burning; feeling sad, unhappy, or depressed; limitations in work; changes to appearance; nausea; damage to immune system; damage to internal organs; and effects on fertility.

KEY POINTS

  • Most patients reported not experiencing potential individual radiation therapy adverse effects or the adverse effects were no worse than anticipated.
  • However, substantial proportions of patients felt inadequately informed about adverse effects, wished they knew more about them prior to treatment, and experienced worse-than-anticipated effects.

Of the 403 respondents, 68% had received radiation therapy within the past 2 years. Overall, 70% were at least 55 years old, 63% were female, 41% had received chemotherapy, and 52% had undergone surgery for cancer. The most common cancers in the population were breast (40%) and prostate (21%).

Survey Findings

Overall, 17.7% of patients reported feeling inadequately informed about the adverse effects to be expected from radiation therapy, and 37.2% reported experiencing adverse effects they wished they had known more about prior to treatment. Proportions of patients who felt inadequately informed about adverse effects were 18.8% among those with breast cancer, 12.2% among those with prostate cancer, and 19.0% of those with other cancers. Proportions of patients who reported experiencing adverse effects they wished they had known more about were 31.5% among those with breast cancer, 29.7% among those with prostate cancer, and 45.1% among those with other cancers.

On multivariate analysis, there were no significant associations between whether patients felt adequately informed about adverse effects of radiation therapy and such factors as age, sex, education level, ethnicity, cancer site, or U.S. region. However, those who reported adverse effects as being minimal (0–25 on a 100-point scale) vs severe (75–100) were significantly more likely to report feeling informed about adverse effects (odds ratio [OR] = 13.05, P < .001), whereas those who reported obtaining information about treatment from family, neighbors, and friends were less likely to feel informed about adverse effects (OR = 0.49, P = .015).

In the subgroups of patients receiving chemotherapy and surgery, 26% and 20%, respectively, reported feeling inadequately informed about the adverse effects expected from their respective treatments, and 36% and 34%, respectively, reported experiencing adverse effects they wished they had known more about prior to treatment.

Improvement of pretreatment counseling across all cancer therapy modalities seems warranted to improve informed decision-making and treatment experiences.
— NAREK SHAVERDIAN, MD, AND COLLEAGUES

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Analysis of solicited comments indicated that the most common adverse effects respondents wished they had known more about prior to radiation therapy were skin toxicity, gastrointestinal symptoms, and fatigue. The most commonly identified adverse effects in this regard were nerve damage, gastrointestinal symptoms, and fatigue in the subgroup receiving chemotherapy and pain and nerve damage/numbness in the subgroup undergoing surgery.

Anticipated Effects

Across all potential radiotherapy adverse effects evaluated, most patients indicated they did not experience a potentially anticipated adverse effect or the adverse effect was the same as or better than expected. However, 29% and 31% of patients reported worse feelings of fatigue and changes to their energy level than expected, including reporting of worse fatigue by 35% of patients with breast cancer. Receipt of chemotherapy and surgery in addition to radiation therapy was associated with a significantly greater likelihood of reporting worse-than-anticipated fatigue (P < .001), weakness (P < .002), and pain (P < .001).

Overall, 55% of patients reported communicating with their primary care physician about treatment options, with most considering primary care physician advice to be very important (64%) or somewhat important (29%) in their decision-making. Other cited sources of information used in treatment decision-making included medical or cancer-related websites (50%), family and friends (33%), patient’s prior experience (29%), and cancer support groups (20%). A total of 26% reported receiving information about treatment options from their physicians alone, whereas 24%, 20%, and 19% reported receiving information from one, two, or three additional sources, respectively. A total of 68% of patients believed their radiation oncologist had the same or more knowledge regarding cancer as other oncologists on their treatment team; this belief was more common among patients with breast cancer (70%) and other cancers (72%) vs those with prostate cancer (54%; overall P < .001.)

The investigators concluded: “This study suggests that experiences with radiation adverse effects generally are congruent with expectations. Nevertheless, improvement of pretreatment counseling across all cancer therapy modalities seems warranted to improve informed decision-making and treatment experiences.” 

DISCLOSURE: For full disclosures of the study authors, visit ascopubs.org.

REFERENCE

1. Shaverdian N, Yeboa DN, Gardner L, et al: Nationwide survey of patients’ perspectives regarding their radiation and multidisciplinary cancer treatment experiences. J Oncol Pract 15:e1010-e1017, 2019.


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