1 in 3 cancer patients wishes they had known more about treatment-related side effects

Nearly one in three patients treated for cancer wish they had known more about its negative side effects, presenting an opportunity for oncologists to better communicate with patients.

That’s according to a survey of more than 400 U.S. adults, published Nov. 20 in the Journal of Oncology Practice. Although 90% of those surveyed said they stand by their choice of treatment, one-third did not have enough information about the side effects of radiation, chemotherapy or surgery.

"An unfortunate reality of cancer treatment is that therapy also has side effects that can impact a patient's quality of life,” Reshma Jagsi, MD, a professor of radiation oncology at the University of Michigan, said in a statement. “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.”

The American Society for Radiation Oncology (ASTRO) commissioned Public Opinion Strategies to survey a nationally representative sample of adults between March and May 2018. All 403 respondents were treated for cancer with radiation therapy within the past five years.

The feeling of being underinformed was significantly associated with the severity of patient’s treatment-related side effects. In fact, 38% of those who said they experienced a severe side effect also reported feeling uninformed, compared to 4% of patients who experienced less consequential side effects.

Other notable findings include:

  • Patient’s experience with side effects from radiation therapy were mostly in line with expectations, but 29% felt more tired and 31% had worse changes to their energy level.
  • Prior to treatment, most patients were concerned about feeling tired (56%), feeling weak (50%) and skin burning (46%).
  • Most patients (55%) talked with their primary care physician about treatment options, with 90% claiming that advice was very (64%) or somewhat (29%) important to their decision.
  • Only one-fourth of all patients claimed their physician was their sole source of information. For those who used other resources, cancer-related websites were the most popular second resource, followed by family and friends, and cancer support groups.
  • A majority (68%) believed their radiation oncologist was as knowledgeable or more so, compared to other oncologists on the care team.

The authors suggested more in-depth patient counseling on treatment-related side effects could help patients and clinicians alike prepare for changes in quality of life. An improved informed-consent process could also equip patients with the knowledge they’re looking for, the authors added.