One in three patients reports gaps in knowledge of cancer treatment adverse effects
When meeting with an oncologist to discuss treatment plans, newly diagnosed patients with cancer must process significant amounts of new information.
“They come with their families, they come with a notebook, they ask meaningful questions,” Narek Shaverdian, MD, radiation oncologist at Memorial Sloan Kettering Cancer Center, told Healio, “but the initial diagnosis and initial steps in coming up with a treatment plan include a lot of discussion, not just about side effects but about what the treatment will entail and how it will work. It’s a lot.”
Shaverdian served as lead author of a study that showed one in three adults undergoing cancer therapy may feel inadequately informed about treatment-related adverse effects they experience.
For the study, sponsored by American Society for Radiation Oncology and published in Journal of Oncology Practice, Shaverdian and colleagues conducted a national survey of more than 400 adults in the United States who received cancer treatment.
For each major cancer treatment modality, approximately a third of patients reported having treatment-related adverse effects about which they wished they had known more (radiation therapy, 37%; chemotherapy, 36%; surgery, 34%).
Those who experienced severe treatment-related adverse effects appeared far more likely to indicate they felt uninformed than those with only mild adverse effects (38% vs. 4%).
Regardless of treatment approach or adverse effects, most patients surveyed did not regret their treatment, Shaverdian said.
“Nine out of 10 of our patients said they felt that they made the right decision about their treatment,” he told Healio. “That was a really good takeaway.”
Shaverdian spoke with Healio about the implications of the study and how information on potential toxicities and other aspects of therapy might be conveyed more clearly to patients prior to treatment.
Question: Why do you think patients are not getting complete information about their treatments beforehand?
Answer: It’s not surprising that, given the complexity of cancer treatment these days, there is a disconnect in some of the messaging. These patients don’t usually get one treatment anymore. They get surgery, chemotherapy, radiation, immunotherapy. So, it’s a complicated matter. Sometimes these discussions go on for a long time. You could tell the patient about some of these side effects, but maybe they aren’t ready to discuss that part of the treatment. Maybe they just want to know what’s next. It can be quite overwhelming.
Q: In your survey, most patients reported consulting their primary care physicians regarding treatment. Are PCPs a good source of this information?
A: That’s a tough question. Most patients consult multiple sources of information regarding their treatment. Half of our patients, at least at the time of this survey, went to cancer-related websites or cancer support groups. However, most patients have a relationship with their PCPs that has lasted for a period of time. In many cases, the initial diagnosis was spurred by a finding in a primary care clinic. However, I don’t know that patients can get all the toxicity information through their primary care doctor. As a radiation oncology provider, I feel very comfortable talking about the complexities of radiation toxicity. When we do radiation with immunotherapy, chemotherapy or surgery, I can talk about some of the areas where there are overlaps. The toxicity of these treatments is a little bit more complex, too. It takes a trained specialist to have that full view of things.
Q: Do you think oncologists are spending enough time discussing treatment plans with patients?
A: Every patient is different. I have some patients who say, “Doctor, I trust you. I just want to move forward. Tell me what the next steps are.” However, other patients might tell you they’re afraid to start treatment because of side effects. With these patients, you have to go into detail about side effects before they are comfortable scheduling treatment. The fact that most patients felt they made the right treatment decision, that patients felt their toxicity experience was congruent to their expectations, suggests these in-depth discussions tailored to patients are happening. Yet, a third of patients felt like they wanted some more information. That was the case for those who had surgery, chemotherapy or radiation.
Q: What type of information did patients want more of?
A: Patients who said they had some gaps in their understanding of what to expect tended to be those who experienced more severe side effects. So, it’s possible they didn’t anticipate how severe these effects would be. That makes sense, because when we talk about side effects with patients, we tell them, “There’s a chance you’ll have fatigue, but for most patients, the fatigue is not so severe.” If you are one of the patients who has that severe fatigue or other side effect, it is unsettling because you are not a part of the majority who had a different experience.
When I counsel patients, I spend a lot of time talking about toxicities, and I do it more than once. I try to paint a clear picture of expectations the patient should have, not just during treatment but down the road. You have to balance it, because the treatment could be necessary for these patients to continue living and enjoying their lives.
Q: Are there any other changes you think should be made in light of your findings?
A: It’s always good to assess how we’re doing in communicating with our patients, especially with all the resources out there. Surveys like this are necessary to get the patient’s perspective on how they’re doing. They’re the ones who go through the treatments and experience the reality. So, surveys like this should be repeated now and then just to make sure we’re doing a good job.
Great resources are available to patients, through organizations like American Society for Radiation Oncology and ASCO. For radiation, there is RT Answers, which is a great source of information on what to expect from treatment. We need to make sure patients are aware of these resources, and that providers are aware of where we are with counseling patients. This is always something that could use our attention and evaluation.
For more information:
Narek Shaverdian, MD, can be reached at 650 Commack Road, Commack, NY 11725.